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.

Development

Not sure what I want to write about tonight, but I feel like writing nonetheless. I've actually written a number of posts that I've decided to keep private, but I need to get something out there! After speaking with some people on FB about this I just might make some of them public...in time. Anyway, what to say? Things have been going well with Ruby. She is doing her little hitch-crawl all over the house. Her feeding pump has been a complete pain in the bum with her moving and grooving, but at least she's only hooked up to one thing, right?! And we are making VERY slow progress with increasing the rate on her pump to get her to the point that she can handle bolus feeds. I'm not too optimistic yet, but we shall see...

Look at that face! So HAPPY to be reading with Papa!

Ruby is growing and learning so much everyday now. She just gets brighter and brighter, and yet I still notice a discrepancy between her and other children her age. I know that comparing only leads to disappointment, or I suppose to bragging rights for certain parents. And I don't want to be "that mom." You know, that mom that's always going on and on about what her kid can do that other kids can't, or that mom that's constantly measuring her child against other peoples'. Ruby is a beautiful individual who will develop and grow in her own way, in her own time. And she might be a little behind other kids, but hey, I doubt I'd be doing as good if I'd been dealt the hand this little girl has! Although I know all of these things, I am still human, and I do still compare...even though I don't want to. This is something I constantly work to overcome.

A couple of weeks ago Ruby met with an OT. This person had tons of questions and although Ruby's fine motor skills are well within the "normal" range for a child her age...I brought up that I haven't seen her doing certain things that other kids are. For instance, I said that she can't sort shapes yet, and that I'd seen a few of my friends' children doing that. The OT said that, "Well, we all know that there are THOSE types of kids, right? You know, we all went to school with a few of THEM, and they're just WAY ahead of everybody else!" Now I really don't want this to sound conceited, but Dan and I were those kids. We were the geeks who got straight A's and would freak out at the sight of anything less than a 4.00. Doing well in school was a big deal in my family. That whole attitude is still sort of ingrained in me...so it feels weird kind of knowing that Ruby probably won't have school come as easy to her. I'm not saying she won't do well, but I do know that most people with VCFS learn differently than the majority of the population...and let's face it, the schools cater to the majority. Dan and I just happened to be lucky that the way schools approach education worked for us.

OK, so maybe one of Ruby's biggest problems will be that her mom is a dork :P

The truth is that I don't know what's in store for Ruby. I don't know how far behind she'll be, how she'll do in school, what her interests will be, or what she'll want to do with her life. I just had a little chat with a mom online who reminded me that what she will do is look back on her life with pride at how far she has come. I had some hesitation about posting on this topic because I don't want Ruby to ever read it and doubt my admiration for her or her abilities. But after getting some feedback from other moms I see that I should try to be honest for her sake and my own. She will hopefully read this one day and beam with pride at the distance she has traveled.

When I see my friends' children climbing stairs, pointing to their body parts, or doing any number of things that Ruby isn't doing yet, I will try to remind myself that this is MY problem and not hers. So often I doubt myself and think that I am doing something wrong, but she will get there someday and I will continue to do the best I can to help her arrive safely. She is fine the way she is and I have to get over my own issues so that I don't forget to pause and admire her accomplishments. She is such an amazing little person and I know she will do great things. She has already given the people around her so much love and inspiration and I'm confident that won't stop.

Lovin' those Pigtails!

Here is Dan's take on it all...he overtook my computer to type this gem, "Dan hates school. Useless. He learned more on his own and while reading the back of a Golden Grahams cereal box. He loves learning but hates school and it's structured ways." Ha! For the record I loved school...I wish I could be payed to keep going!

Growing Family

A new member of our family arrived yesterday at 6:29AM. My sister, Casey, gave birth to an absolutely perfect baby boy named Ronan. Personally, I couldn't be more in love...except for with Ruby of course ;) He is just the sweetest little ball of wrinkles I've ever seen and I can't get enough of him!

My sister had an incredibly difficult labor, but because I'm not sure what she wants me to say, I'll keep it brief. I will say that she was amazing. She was so strong and brave, and throughout the entire time her thoughts were focused on bringing her little baby into the world in the safest possible way. Her husband was also extremely focused and calm. I'm sure his presence was invaluable to her. Her baby ended up being delivered by Cesarean but they are both doing very well, all things considered.

This little man means so much to my family for so many reasons. After the last year we've had, and our, to put it VERY mildly, rough newborn experience with Ruby, it's so wonderful to have a baby that has no real problems! We all keep saying things like, "He's so pink!" or "I can't believe how easy it is to move him and change him! He's not attached to ANYTHING!" It's also such a nice thing to see our family growing again with new life. After my grandparent's died (3 within a few years of each other) it seemed like our family was ending. But now that there is all this life it just...well it feels so invigorating to have children around again. They really do make each moment a special one.

I would also like to tell you a little bit about Ruby meeting her cousin. At first she didn't seem too interested in him, and maybe a tiny bit jealous when I would hold him. But after he woke up she was fascinated. And the sweetest moment of their meeting was when a nurse came in to do an assessment on him. She said hello to Ruby and who responded with her "stink-eye." The nurse said as much and I replied, "She's not a fan of nurses." When the nurse started assessing Ronan he began to cry. Ruby became extremely concerned. She kept pointing to her cousin and when I brought her close to him she had to keep petting his little feet, all the while continuing her death-stare at the nurse. She then started pointing to him and patting her chest, to sign "me." This is her way of telling us she wants something or thinks something is hers. Then when he was given back to his mama but was still crying, Ruby tried giving him the toy she was holding. The rest of the night when he would cry she wanted to pet him and if we didn't let her she would rub our shoulders in the gentle way we told her to touch him. It was a really moving thing and I couldn't be more proud of her. They are going to be really close, I just know it :)

I'm going to ask my sister if she minds if I post a few pics of Ronan but if you're friends with me on FB then you can already see some there.