New Happenings and Granny Pat

Ruby has become so affectionate lately. She was always a cuddle-bug but she has taken her lovey-doveyness to a whole new level of late. She is obsessed with giving us all kisses at random and better yet she has to make sure that she kisses everyone equally. For example: Ruby, my mom, sister, nephew, and myself were out running errands the other day and she wanted to give my mom a kiss. Then she had to lean over to each of us to give the rest of us one too...even little Ronan. She is such a peach. She still loves hugging her books, all animals, and has even started to hug a few select people that she really likes. It's so wonderful to see her enjoying other people. She's really been making wonderful progress socially.

Snuggling with Granny...Ronan's in on the cuddles too

She's still working on tasting things. Some days are better than others on this front. Today was not one of those days but I'm sure another good day will come along soon. Ruby has started to become mildly interested in art materials...which of course I am over the moon about! She still wants to eat the crayons more than draw with them, but she is getting the idea of making marks. I've already run out and bought her a sketch book :P She is still not walking but is cruising like mad. Dan and I are noticing that she does not cry much anymore. She's a pretty happy kid these days. Fussing mostly when she's overtired but basically she's just loving life and we are loving sharing it with her.

In less Ruby related news, Dan has resigned from the company that he's spent the last 9 1/2 years of his life with. He's been with them since we started dating so it's a bit scary but also very exciting! He'll be working from home which is wonderful because it means he'll get to spend more time with Ruby and me. And I'm loving the fact that we'll be able to stay in bed a bit longer in the morning :)

Ruby in her knit hat

I've also decided to take up knitting again. I haven't knitted a thing since my Granny died 6+ years ago. She taught me how as an adolescent and it's just something I can't do without thinking of her. I miss her so much. People say that it gets better with time but it really doesn't. You just get used to it feeling awful. I wish she were here to see Ruby and cuddle her up. How can I even write about her? She was so many wonderful things.

I know this list won't mean anything to most of you but this was my Granny: Grilled cheese and omelets. The GoodNight Book and Richard Scarry. Forget-me-nots and poppies. Candlesticks and records. Shag carpeting and candy dishes. Kick ball and walks to the park. Christmas socks and ponchos. Handkerchiefs and hot water bottles. Honeydip Donuts and Trudy's. Yelling at Chuta but really loving her. Knitting and sewing. Scones and Turkish Delights. Bath time and Ivory soap. Weeble-Wobbles and toy trains. Writing letters and reading the paper. Cowboys and Indians. Cuddling on the couch and singing songs. See you later alligator and after while crocodile. Pond's face cream and baby powder. Bingo and CandyLand. Louis Armstrong and John Denver. Perfect Christmas dinners and pizza cut up in squares. Beds that were always perfectly made and counters without a single crumb on them. Bath robes and knit booties. Always listening to my stories and making me something to eat. Loving me so unconditionally you wouldn't believe it. And just about a million other things that helped to shape my childhood into the type you read about in nostalgic old novels. God I miss her so much. I love you Granny.

Granny, Granddad, Casey, and Me

Food

Our society is centered around food. We need it to survive. We receive pleasure from it. It acts as a vehicle to strengthen our social relationships. Some people even seem to enjoy the act of preparing it (rest assured I am NOT one of those people ;) Food is everywhere around us and yet we barely notice it. I mean we all get hungry and I certainly love eating, but I never thought about how pervasive food is. In many ways it defines a person. When we first meet children we often ask them what their favorite food is along with their favorite color and hobby--as if it is an aspect of their personality. Our friends share favorite restaurants and couples share favorite meals. Food, simply put, is a big freaking deal.

So what happens when your child doesn't eat? The reality that is so much a part of everyone else's world slips away from you. You lose that part of their childhood--until they can eat once again. You see other people breastfeeding their children and a sharp pain stabs you in your gut. You sit with your husband in a restaurant and watch a happy couple feeding their child and you are reminded in one searing flash how different your life and your child is. And it hurts. Badly. But it's something you must get over. It's something you must try to smile thinly through and say, "What a beautiful baby you have" or "How nice to breastfeed" or some other comment that just might distract you long enough to forget that pain, and to hide it from the rest of the world, because after all...it isn't their fault that their children eat. But I must say when you hear parents complain about how messy their kids are when eating, or how fussy they get, or how much work it is, a tiny bit of fury might escape your lips later when venting to your spouse.

At one time Ruby used to love to eat, but her body could not handle food. Every time she would breastfeed or drink from a bottle, she would have 3 hr long episodes of reflux that choked off her airways, and burned her throat and nose. It was horrible. There are two things newborns enjoy: sleeping and eating. And one of those things were not working for Ruby. Because of her strong will to live she craved food and just loved eating...but as I said, her body didn't agree. Her body became so tight and stiff during her first 2 months because every movement she made would cause reflux. It was heart-breaking. She had only a handful of moments when she was awake and not in pain during those first months. And usually those were the times she was NPO (not allowed to eat) before a medical procedure.

It became clear that we had to feed her intestine instead of her stomach. But even throughout that time we would try "practice feeds." 5 mL bottles were all her tummy could handle before that horrid reflux would set in. At first she was still so hungry because she was not used to her belly being empty. But gradually she became used to it, and little by little lost interest in food. We worked with the feeding therapist but she started eating less and it became more of a chore to get her to take even 3 mLs.

I cried so many times when she began to lose interest. I remember a time when we all joked, "She loves to eat! She sure is a Tylenda!" We were so impressed that in spite of her reflux she still had to desire to feed. But as I said, that began to taper off as time when on. She still loved her binky and we encouraged her to suck. However, after her open heart surgery she was done. I guess it was just one too many suctionings or one too many intubations. She just didn't want to eat or suck or anything. She began to gag and retch. It was very hard to see. I missed feeding her so much. I missed watching her for signs of hunger. I missed her needing me in that way. She had learned that things that went into her mouth, especially things that other people controlled, were always bad scary things. At the stage when oral exploration is virtually the only type of exploration she learned the exact opposite of what a healthy child would. When this happens, it is said the child has an "oral aversion." And let me tell you, that is hard to combat!

But to my very surprise Ruby is combating it. She is fighting this aversion as she has fought every other medical battle and she is winning. And I am so proud of my little girl. We sit at the table and I lift a spoon to her mouth and miraculously she leans forward to take it! This is trust! She is trusting me with the thing she fears most and I love her so immensely for it. She is not eating yet, not really. She is definitely not anywhere close to being able to sustain herself. But she is tasting. She is challenging all she knows about oral experiences because...well because she is the most amazing, most brave, and most determined person I have ever met. And I could not be more proud to call myself her mother. What a child I have! What an amazing little spirit!

So now I go out to restaurants and my child puts on a bib. She gets to sample things from my plate. I get to spoon her food and tip the little spoon up so that some of it actually gets in her mouth. She gets to have tomato sauce all over her arms. She throws food on the floor. She rubs her soupy mouth all over my shoulder. And I love every second of it! So if your kids take forever to eat, are fussy about food, or make an insane mess, just remember to try and enjoy it. You are so lucky! But you know...I guess I am too! :)

Last Halloween

Halloween is coming up and I can't help but think of last year, which just plain stunk. What you need to know in case you already didn't, is that at the time Ruby was hooked up to a million things. Now we had gotten pretty good at working around her leads, pulse ox, and O2, but her feeding tube situation was a mess. When Ruby had her first G/J tube placed the nurses in IR cut it down to a ridiculously short length. Because we needed a tension loop on the end of it we couldn't put Ruby in many styles of clothing. She also needed her G port to be vented 24/7. We did this by stringing up all sorts of inventions to suspend a vented syringe in the air. If you've never been in or had a child in this type of situation you probably have no idea what I'm talking about. But if you walked in on us back then, with no knowledge of NICU kids, you probably would have been shocked and appalled. How Ruby had to live was horrendous. We basically had a 3-6 foot radius to move her. Imagine that. Having your child tethered to a wall for nearly 5 months. We didn't even get to take her for a walk around the NICU until she was 3 months old. We did have that very brief stint at home for 3 days, but were right back in the NICU after that.

The Tubes

OK, now I'm off on a tangent...but anyways, because of all that "stuff" the only kind of outfit we could put Ruby in were front snap-up sleepers. I refused to let her wear hospital clothes after the first few weeks there because I couldn't stand the thought of her in them. So we had tons of sleepers! And even a few front snap onesies. We made it work, as best we could. But when Halloween began to near finding a costume became a nightmare.

Having her wear a Halloween costume became really important to me. Not only because I absolutely LOVE Halloween but because it was Ruby's first. I was also pretty convinced she was going to die during or after her open heart surgery, so in my mind I felt there was a good chance it was going to be her only Halloween. So because my family knew it was a big deal to me, my mom bought Ruby a really cute sleeper and modified another outfit that my cousin had gotten her. They both were sort of pumpkin themed so I thought that would be her costume. I remember asking my mom to get her a little pumpkin hat to complete the ensemble.

Cute, right?

The day before Halloween a nurse asked me what Ruby was going to be and I showed her the outfit. She said, "Doesn't she have a costume?" I said, "Oh, this was going to be her costume." I think she noticed how my face fell and she tried to catch herself, "Oh...well that's cute. I just meant a real costume." I wanted to cry, in fact I think I did. I wanted to yell at her, "You try to find a costume for a kid with this much shit hooked up to her!! You try to make something when you spend every waking hour stuck inside this prison!" I did not. I know she didn't mean any harm, I just think that some of the staff who work in environments like that forget what kind of situation their patients' families are dealing with. They get so used to it and I don't know if they're thinking about what it feels like to be going through that. I mean, there was a big chance my child was going to die in a couple of weeks...I was feeling pretty vulnerable.

My mom came in later to see Ruby, like she did pretty much every day since she was born. She immediately noticed something was off with me, like all good mothers do, and asked what was wrong. I tried to play it off as nothing but told her I was a little bummed Ruby didn't have a "real" costume. Well, that woman searched far and wide for something little Ruby could wear. She called me at the hospital that night and said she'd found something that we could make work. Ruby was going to be a squirrel :) On Halloween I dressed her in one of the cute outfits my family had gotten for her, but for about an hour she did become a little squirrel. She was hands down the most perfect little squirrel you had ever seen. I got my photo op and Ruby celebrated her first Halloween in style...tubes and all.

:)

Sleepy Squirrel

I didn't know where this post was leading but I can see now it's to a big shout-out to my mom. How is it that mothers know instantly when something is wrong and never fail to make it better? I just love her so much. Thanks Ma.

What is Ruby going to be this Halloween? Well you probably have an idea if you're on FB, but rest assured pics will come :)

GRRRR!

To Tell or Not to Tell

I was chatting with another parent to a child with VCFS online, and he asked me about who we've decided to share Ruby's diagnosis with. Well, clearly the whole internet world knows...but in our personal life we've been nearly as open. Now if a stranger approaches us and we begin talking, I must admit I'm far more likely to divulge the fact that Ruby has a heart condition. Why is that? I honestly don't know if I have an easy answer to that question.

Sometimes I think I share her "heart story" more readily because I am so proud of how far she's come on that journey. I want to let the world know of my baby's strength and will to live. I know things may change in the future and that she has fought only one battle in a what will be a very long war, but she won that battle and I am proud. I should add that if she does lose this war at a later time I will still be glad for her fight, and proud of her for knowing when to walk away :)

Other times I think I omit her diagnosis of VCFS because of the stigma attached to people with "that type" of disability. Our society still casts a downward eye to people with cognitive or psychological impairments and that is something that is very hard to overcome. My mother and I were talking after church one day about the fact that in spite of people's kindness to such individuals, that it is rare for non-disabled and disabled persons to develop genuine friendships with one another. Although we may say, "Hello, how are you?" Do we ever say, "Would you like to grab a cup of coffee this week?" Maybe this is something we should all work on...myself included.

Anyway, perhaps it is my knowledge of this type of treatment that keeps me from telling others of the fact that Ruby has VCFS. The funny thing about this is that Ruby may have no significant cognitive impairments! She may end up just like the rest of the us, skilled in some areas and well...not so much in others ;) But I don't want people to place her in this category before they come to know her. I would much rather they take note of her personality and treat her as any other child, than to lump her with a population that she may or may not share commonalities with.

So what to say about this? Should I tell everyone Ruby meets? Of course not! But I do think I will keep on explaining her condition to those that share an interest in her development and have taken the time to know my daughter as she is, without bias. I hope that as Ruby ages she will decide independently who she feels comfortable sharing her medical information with. And if she does share it, as I said to the parent I began this conversation with, I hope it becomes a mere descriptor and not a definition, "I am Ruby. I love music and reading. I have blond hair, VCFS, and think that cake is disgusting." ;)


Oh, and if Ruby ever asks me to when she gets older, I will gladly delete this blog to respect her privacy...so read up while you can! Ha!

Going Home: Take 1

A lot of things happened in Ruby's first two months in the NICU. She developed a dairy/soy allergy thanks to the docs fortifying my breast milk. She had a G tube placed when it became clear she had "failure to thrive." And when her reflux became worse than ever...to the point that we couldn't transfer Ruby from our arms to her bed, she had an NJ placed. This was done after a lot of confusion, miscommunication, and debate between our family, the NICU staff, the GI staff, and IR. Click here to find out what an NJ tube is.

A slightly less than 2 month old Ruby, looking adorable in spite of that God-awful NJ

After her NJ was placed, we were nearly at our wits end with Children's. For every week that Ruby was in the NICU we had been told that she would be coming home the next week. It was 8 weeks later, and we were still there. It wasn't all the hospital's fault. I mean there were and are many problems with CHOW, but they aren't all to blame. Some of our frustration came from just not being home. Not having any sense of normalcy. Being forced into a separation of our closest friends and family. Ruby was allowed only 4 designated visitors besides ourselves, so with the exception of Ruby's first few hours on Earth, she had never met any of her family besides Dan, myself, and our parents. It really was just an awful environment to become a parent in. We didn't even have a window. Ruby had never seen daylight...not even once. And she had only been outside for 30 seconds or so on the day she was born. In too many ways to detail on here, life in the NICU was horrible.

We gradually developed a reputation among the nurses. More and more nurses shied away from us. We became known as "that family." We were the parents that were known to complain about, argue with, not listen to, insist, demand, and generally question everything they said...only when they were wrong of course ;) You might think I'm exaggerating but months later when we were in the CICU we had a NICU nurse that floated between ICUs from time to time. She told me, without any prompting, "Well, I don't know what everyone was talking about. You seem very nice to me!" Ha!

Ruby when she came home getting a "practice feed" from her Auntie

It wasn't that we thought all of the doctors and nurses were inept. But some really did NOT do their jobs. They would play on FB or solitaire, while an infant they were responsible for would lay crying in bed. It made us scared to leave Ruby's side. Now, I might have said this before, but we noticed that the only time that many of the nurses gave affection or stimulation to the babies was when they were being fed. But since Ruby was not fed, we feared that when we were gone, she was left alone. She was also quite a bit older than most of the NICU babies, and therefore needed to be played with and entertained that much more. Thankfully Dan's father worked 2nd shift, so his parents would come every night and take over until early morning. They were harassed many times for this, even thought CHOW proclaims to allow parents and grandparents to be with the children 24 hrs a day. One of the reasons they were bothered was because they "held Ruby too much." This was a problem that many nurses seemed to have. They did not like it when Ruby would sleep in our arms. They insisted that she would never fall sleep in a bed and fed us all sorts of baloney about how we needed to put her down to sleep. We, of course, ignored all of their remarks and held Ruby every second that we could...in fact we still do :)

There were many other problems that we had during those first 2 months, and I'm sure many are common to other families who are forced to endure prolonged hospital stays. But we truly did become a thorn in the NICU's side. During this time Ruby was getting worse and worse. Her reflux had subsided due to the NJ, but her O2 saturation had continued to fall. She required more and more oxygen to maintain her sats, which were in the 70s range. She frequently had spells when her sats would dip into the 50s and even 40s. And her NJ was only a temporary tube. She was supposed to have a GJ placed after her G tube site had healed. And yet, out of the blue...we were told that we could go home.

Dan bringing just a small portion of my milk home

I had been given the choice that we could either bring Ruby home on September 11th and keep her off of breast milk, or she could stay another week or so and we would try to start feeding her with the milk that I had been so faithfully pumping. Because of her dairy/soy allergy she had to be taken off of my milk. And even though I had been strictly abstaining from such products--mighty hard for a vegetarian who doesn't like vegetables I might add--they refused to put her back on my milk. I had pumped so much milk that I had taken up 1 and 1/2 freezers in the NICU! So I was asked to make the aforementioned decision...and although I desperately wanted Ruby back on my milk, I decided I'd much rather have her home, where I could experiment with giving her my milk anyway!

Dan and I wanted Ruby home so badly that I think we were blinded by what having her home, in that medically fragile state, really meant. Honestly I think it was irresponsible for the doctors to send her home in that condition, but at the time we just wanted OUT! And so after a few days preparation we walked Ruby out of the hospital nearly 2 months after she had first entered it. She used her car seat for the first time, saw the sunlight, felt fresh air on her skin, listened to records, and met our pets. We were even able to take her on one brief walk in her stroller. Some of my friends were able to meet her for the first time. Her Auntie and Uncle were able to hold her for the first time since birth. And I got the spend the first night ever with my baby since she had left my body :) There were many firsts in that short time!

Going for a walk!

While those aspects of having Ruby home were wonderful, there was also the reality of what life was like for those crazy 2 days. We had to sleep in the living room where all of Ruby's medical equipment was stationed. Dan and I slept on the floor while Ruby slept in her baby swing--the only piece of furniture that had the sharp angle she needed to decrease reflux as she slept. I was busy nearly every second she was home. I had to get up around 5 or something to do morning meds and prep for the day. She had so many tubes and paraphernalia that needed constant cleaning and care. And I must admit, I was still under the impression that these things had to be done in the EXACT way I was told at CHOW...I am now WAY more laid back about how I clean things and how I handle Ruby's medical care. But back then I didn't know any better.

How we slept

It was during our preparation for Ruby's first cardio check-up that she had a major blue spell. We were trying to change the tape around her NJ and she flipped. She de-satted into the 40s, possibly 30s, and we were on the phone with the hospital. They said to bring her in, and that she would probably be readmitted. When we arrived and she was examined, her sats were still dangerously low and so her card told us with excitement that he'd "pull some strings" to get her back into the NICU. Why we didn't speak up then and insist on going to the CICU instead I'll never know! If we had only spoken up I would've been able to stay with her at night, eat with her in the room, and have a window! But we didn't say anything, I guess we just assumed that her doc knew best, and he felt it would be better for her to be among the staff that knew her best. Reflecting on this now, I see that this doesn't make sense. The doctors change in the NICU every few weeks so we had doctors that had never seen Ruby before anyway!

But we did keep quiet. And we were back. Walking back into that unit, I felt like throwing up. I hated that everyone knew me. I hated that I knew where everything was and how the whole placed worked. Most of all I hated how normal it felt to be there.

Letter to the Editor

Letter I sent to the editors of various local papers:

The primary is over and the results are in. Scott Walker will be running against Tom Barrett and come November, Wisconsin will have to decide on the direction we want to move in. This election is important to all of us, but for my family it truly is a personal affair.

My daughter Ruby is 13 months old, and at one day of life was diagnosed with several rare and very complicated congenital heart defects. At 3 1/2 months old she had her first open heart surgery. She also has a genetic condition which affects everything from her GI system to her cognitive development. She has fought hard for every minute of life. And despite it all she has become a loving and caring toddler. Because of her condition we DEPEND on BadgerCare as supplemental insurance. We would not be able to survive without it.

Ruby requires a specialty formula that costs around $50 a can. A can of this formula lasts approximately two days; that's over $9,000 a year. And while it is not covered by our primary insurance, BadgerCare does pay for it. BadgerCare also covers thousands of dollars worth of co-pays, home medical equipment, and the therapies my daughter requires to survive and thrive. Scott Walker has already said he will be cutting many aspects of BadgerCare. Will my daughter be one of the people cut from his list? Will this little 13 month old girl suffer because of the wealthy class' need for a tax break?

BadgerCare is not just for families who are in economic hardship. There are tens of thousands of children, not to mention how many adults with disabilities in this state who need supplemental disability insurance to live. Will they be on Scott Walker's list? Will they be punished for the greed of others as well?

There is another reason the election of Walker terrifies my family so, and that is his desire to cut stem cell research. Ruby was born without a pulmonary artery. In her open heart surgery a cadaver's artery was transplanted into her body. This will not grow with her as she ages, and so she will require approximately six more open heart surgeries before she reaches adulthood. With each of those surgeries the risk of her dying is very great. But with stem cell research it is possible that doctors will be able to transplant a pulmonary artery that will grow with Ruby. This could mean the difference between life and death for my child and countless others who suffer from similar heart conditions.

There are many other reasons to vote for Tom Barrett over Scott Walker in November. But if you can't think of any, remember my daughter. Ruby loves books and cats, cuddling with her family, and swinging in the back yard. She would not have made it this far without BadgerCare and neither would we. Her chance at life may be cut short along with all of the other cuts that Walker proposes to make.

Our society is what we make of it. In this country and in this state we get to decide what values we will place in high regard. Do we want to throw out human compassion for selfish greed? Please say no. Please show my daughter that people can choose to do the right thing. That the people of Wisconsin will decide to value her life over the size of their wallet.

Sincerely,
Kerry Tylenda-Emmons

I'm Done with these Pixie Sticks!

For Halloween last year my parents bought my grandpa candy to hand out to the neighborhood kids. Apparently he was furious when he discovered that Pixie Sticks were, "just sugar!" He told my mom in a fit, "I'm done with these Pixie Sticks!" We thought it was hilarious and ever since that's been our families way of saying we were over something, done, exhausted to our very ends. That is how I feel right now.

Sometimes life is just so incredibly hard, isn't it? I know that Ruby is truly fine right now. My ever-growing prayer list is proof that there are many other children who can not be described as such. But one of the things I have learned is that just because stress is different for everyone doesn't make it any less stressful! Pain is pain, worry is worry, panic is panic regardless of how it comes about. I am NOT saying that me panicking about Ruby's tube/pump situation is the same as the terror or pain of losing a child or anything like that. I am merely saying it is still terrifying when happening. Does that make sense?

Anyway, saying that the last 24 hours have been stressful would be an honest assessment of events. Ruby's G/J was pulled from her body around 1AM, and after much confusion, anger, time-wasted, and sleeplessness she now has a MIC-KEY G. We were admitted to the hospital and experienced all of the awfulness that goes with it. Ruby was so scared, and will I'm sure be more touch-averse than ever after this latest stay. The poor thing was shaking at the sight of a nurse or stethoscope. We as parents often talk about having PTSD but there is no doubt in my mind that Ruby suffers from this worse than I could imagine. She is easily frightened and disturbed by crowded rooms and people touching her. When she encounters strangers for the first time she is extremely, if not painfully, shy. And every trip to the hospital, every time she is restrained, every needle that enters her skin acts to reinforce that PTSD. I truly hate the hospital and so does she.

As she gets older the look in her eye becomes more discernible as sheer panic and desperation. And she looks only to me, her mother, the one person who is supposed to protect her with such immense horror. She is undoubtedly thinking, "Why? Why are you letting them do this to me?" Sometimes it amazes me that she can still find comfort in my arms. I feel such a failure when she gazes upon me with that expression. And today I felt that same familiar pang after we were discharged and were finally getting comfortable at home, when her pump began to malfunction again. And then when we realized the MIC-KEY they had placed was leaking, I was done with these Pixie Sticks. I could not breathe, and I began to sob uncontrollably. I felt like a failure once again.

You see, when Ruby's tube is in place and her pump is functioning I find it easy to forget her utter dependence on this hardware. But when it all breaks down, I realize how I can not even feed my child without mechanical assistance. I could not keep her alive. I felt useless and unworthy as a mother. I know these feelings aren't rational but they exist when the mind is fearfully jumping from one thought to another. I am now more calm, but the burn of those emotions is still with me. I wish I could provide sustenance for my baby like other mothers can. But I can not.

Right now, Ruby is resting peacefully. The poor thing was so exhausted she fell asleep while I was changing her diaper. Her pump is working and new ones have been sent. Her MIC-KEY is still leaking but we can stay at home and take her in tomorrow if it is still leaking significantly. So far she is handling the G feeds well but only time will tell if we need to switch back to a G/J. Most importantly Ruby is here and safe. Thanks to everyone who offered support online, through phone calls or texts, or by being with me. I really do feel loved.