Over-Thinking

I am most definitely a person who over-thinks things, which is probably why I love writing this blog so much. It's a way for me to sort things out in an organized fashion...or at least a slightly more organized. Anyways, I am fairly neurotic. I can be extremely self-conscious, as those closest to me know. I constantly worry about the relationships in my life; whether they are strong enough and so forth. I worry about whether I have let someone down or out, whether I have been a good enough friend, sister, daughter, wife, and of course mother. The list goes on and on. Sometimes these worries consume me. I feel suffocated and the very things I worry about come to fruition because I am in too dense a fog to prevent their occurrence. Lately one of the things I'm been over-thinking is Ruby's behavior and development.

Now I know I've talked about her development before, and I know that's something that every parent thinks about and worries about...especially parents of kids with 22q. But I also constantly worry about her behavior. I'm aware that many children with 22q Del have behavioral problems and that is ALWAYS in my mind when I watch Ruby play, get sassy, or interact with other kids. So far, when I think about it calmly and rationally, I don't think she has exhibited any behaviors that I find abnormal for her age. She does have a tendency to use repetitive behaviors to self-soothe...but it's not quite self-stemming. It's actually quite similar to some of the of things I do; things like rubbing my left arm while speaking in front of others or moving my toes together when I get mad. And her actions have not become obsessive or inhibited her play so her OT has said not to worry. I really should take her advice.

Other things that often concern me are normal toddler things. Whining about things, throwing tantrums (usually only when tired or sick), getting mad about sharing toys. While these are all standard for a toddler I am always thinking, "Oh no! Does she have a behavioral disorder? Is she not listening because of ODD? Why is she not playing nicely?" Ah..the mind of a mother! Anyway, all of these things circle in my head day after day. And I've decided to stop the cycle. No more. No more over-thinking. Ruby is who she is. She is going to fuss and whine, sometimes more than other children and sometimes less. She is not a perfect person and neither am I. I am going to deal with her moods and behavior the way I see fit, and not the way others do. I am going to enjoy all of her and not get preoccupied with how I think she "should" be acting. So there world! I am putting it out there...no more over-thinking!!!

OK, well maybe just less over-thinking. After all we can't change our very nature ;)

Not Talking

Things are so good most of the time. Life moves along steadily, and for me with Ruby, very often joyfully. I wake up, get Ruby's feeding pump set. We cuddle, get dressed, slowly drag ourselves from bed. We play, eat (a little bit), go on play-dates, read, and do all of the normal things that a toddler and mother duo might do. And then there are days like today. Days that seem completely fine. Busy, normal-for-us days, and yet I find myself sobbing as I ride home in the car. So why did that happen?

I don't know for certain. I assume it was just one of those things. One of those cosmic piling of events and circumstances that lead a person to feel like crap about a particular topic...if that makes any sense. We had Speech today. It went fine, just like most of our speech sessions. Later we had an ENT appointment--more talk about talking, so to speak. Ruby and I went to dinner with friends and one tiny little thing someone said there set me off. I don't mean I was mad at them, I wasn't and I'm still not. I don't think I even seemed sad at the time. But what was said brought out my own insecurities. That I am failing her. That I am doing something wrong. And that I am the reason why Ruby is not talking.

Maybe I am. I don't know and that is part of what makes it so frustrating. Is it the 22q, is it the delayed start she got from being in the hospital so long, is it from us and how we interact with her, or is it just...her? Who knows?! I certainly don't, and although I feel as though I am doing everything in my power to help her speak perhaps I'm not. I follow my instincts and I think that I've doing a pretty good job, but nobody is perfect.

I really hate being so touchy about this. I hate that one person can make a COMPLETELY innocent comment and I'm off. My little brain just runs rampant with all of the perceived implications of what that person truly meant. By the time I'm done over-analyzing and totally misconstruing what that person said I am a mess. And that's what happened on my ride home today. So friend, if you read this and know I'm talking about you, please know that this has NOTHING to do with you and all to do with me and my own crazyiness.

My sister said the other day that the two things she has learned about parenting are to be flexible and don't judge. Because nothing happens the way you plan it and we all are just trying to get by the best way we can. It's so easy to be defensive when it comes to your kids, and when you have a kid that's different I think that the defensiveness goes into overdrive. There's all this baggage when your child has problems. For me, I'm so used to being Ruby's protector and advocate that I take offense and get emotional pretty quickly. Tonight I hid it from my friends but as soon as I had time to stew in my own thoughts I lost it.

Gah! I feel like this post is all over the place! Oh well, at least it's an accurate representation of my state of mind ;) So how to conclude? I guess I want to say that even though most of the time I feel OK about Ruby not talking, it's something that I know she's behind on and that makes me worry. And one of the things I worry about is that I am somehow to blame. So if you know me and love me, and we ever start discussing my little "non-talker" just keep all this in mind if I start acting crazy.

The Non-Talker...at least she's cute ;)

The Stereotypical Thanksgiving Post

Well, I debated whether or not to take part in the whole, "I'm thankful for..." blog thing that seems to happen on most people's sites and you know I just couldn't resist ;) So I'm thankful for:

The way Ruby wakes up like a pop-tart in the morning. She's fast asleep and then "pop" she sits up and is ready to play.

My husband's brain. Boy do I find his smarts sexy.

Ruby's love of music. She just has to dance to everything she hears.

My mother who, if you know her, is well...she's just the perfect mom and granny.

The fact that I can call up my sister and do just about any mundane thing with her like go to the store and we have an amazing time.

My nephew's dimples. I just want to eat him up.

Ruby's cuddles. Her cuddles are so intense and affectionate that you just melt.

My dad's hugs. They still make me feel warm and safe.

How Ruby needs to give everyone a kiss around her if she even kisses one person. And the fact that it has to be on the lips.

My friends, who really are the best friends in the world and they know it. Nuff said.

For everybody and everything that I don't have time to mention here but that makes me smile...and that is a big list.

Getting to know new people who face similar challenges as us with their brave and beautiful children.

Ruby's curls. They are just so frickin cute.

How Dan sleeps with Ruby in his arms every night, and how she has a crazy hard time falling asleep without him.

The amazing support I have received from extended family and friends. You all know who you are.

The way Ruby shrieks with glee at every single balloon she sees. Same goes for trees, dogs, cats, and signs.

Taking long walks with my baby.

All of the people in my life, past and present, who have helped me to become the person I am.

Wine.

My daughter's life. She makes me a better person and gives me more joy than I ever thought a body could handle.

For the best year of my life.

NICU Memory

Just a little post tonight. Ruby had a playdate with a couple of her heart buddies today. While there, we mamas started swapping hospital stories and I recalled how we used to get my sister to see little Rubes. The NICU has a strict visitation policy. Only Dan and I, and our parents, were allowed to see Ruby for the first 4 1/2 months of her life. My sister had seen her at her birth and for one visit when she came home for her 2 day stint at 2 months old. This, of course, was heart breaking for her and for me.

Meeting her Auntie for the first time since birth

When we were back in the NICU and had FINALLY gotten a "window seat" we devised a way for Casey (my sis) to see Ruby. There is a waiting area just outside the NICU that is perpendicular to the main hall of the wing. So basically, if you are in the waiting area you can look out of the window and see into a few of the NICU rooms. At night, if you turn on the lights in the NICU and turn off the lights in the waiting room, you can see in pretty clearly. When we figured this out Casey used to come by and we'd hold little Ruby as close as we could to the window (as far as her leads and various wires would stretch) and she'd be able to see her niece. It was so sweet...and sad.

Anyway, I'm glad they get to spend so much time together now. It took months of consistent weekly visits for Ruby to get so close to her, but all that devotion paid off! Now when we pull up to her Auntie's house Ruby squeals and points with anticipation...she just loves her Auntie Casey :)

I LOVE this pic! I need a new one of them though, because Casey is quite pregnant here!

Ruby's OHS Annivsary

Last year around this time we were finally reunited with Ruby after our longest parting. The actual surgery latest for 11 hours but we were separated from 8am until around 10pm. When I think back to that morning I remember feeling the same way that a person does when waking up early to take a long trip...with all of the happy anticipation replaced with terror. We woke up very early in order to get to the hospital and spend time alone with our daughter. When we arrived I remember thinking, "Should I wake her up?" We did. We knew that we both needed to hold her for what could be the last time. We both needed to imprint that memory so that it would be something we could always look back on with peace and fulfillment. Ruby was calm and affectionate. She snuggled deeply in our arms as she done many times before and rested. My parents came and even the cleaning lady I mentioned in yesterday's post came in early to visit with her. We all tried to remain calm in order to prevent Ruby from becoming nervous. And as the morning wore on more and more medical personal started sifting in.

We signed consent forms and were presented with the same information and disclaimers we had been told many times before. And suddenly it was time to say goodbye. I had to take the hardest walk I've ever taken. Sadly it's a walk I will have to take again and again as Ruby grows. I carried my child, with Dan by our side, to those double doors that parents can't cross. Even now, recalling that walk and that separation causes my heart to catch in my throat. It was terrifying. It felt like a death march, like I was willingly handing my child over to an executioner. I wanted to soak up every moment with her and I was so scared my last memory would be of her crying. She did not. I hugged her and tried so hard not to cry. I didn't want her to see fear or sadness in my eyes. She went off with the nurse, thankfully without a struggle but as soon as those doors closed I erupted. My heart broke with the loss of control and the potential loss of my daughter. I kept thinking about the fact that in moments she was going to be restrained. And in that instant she would be afraid. I hated that her last thoughts would contain fear. I hated that I couldn't be there to hold her. I still hate it. I hope she wasn't too frightened...but I'm sure she was. Just as she now is during every doctor visit and every hospitalization. It was horrible and it still is.

The walk back to her room to meet my parents and collect the last of her belongings seemed incredibly long. I didn't want to look at my mother. I knew she would be crying and that my tears would cause her to cry harder. I made myself stop. I regained composure and knew that was the only slip I would allow myself. The rest of the day I would remain clinical and distanced from what was really happening in order to survive. Thankfully I was able to do just that.

We made our way to the waiting room and in there well...we did just that. That place was not so much fun after 11 hrs or so. First of all it was quite uncomfortable. They were doing construction next door so it was loud. The chairs were stiff. There were no couches. It smelled like urine. (The new waiting room is WAY better) We're also stuck in this room with families whose kids are in surgery for really minor things. And it's kind of hard to hear all of these parents talk about ridiculous fluff while your kid is on the table for something that has just as good a chance at killing her as it does saving her. Anyway, the rest of the day went by in that smelly little room. We got updates every hour or so. I would go and pump. We would eat a little something. It took forever.

Ruby Post-Op

One of the best updates we received was that the surgeon had attempted a complete repair. Up until that point we were unsure if only a partial repair could be completed. That would mean another surgery in a few months and possibly not going home until after that second operation. So we were overjoyed to hear that was not the case. But, if you know Dan and I, we don't like to get too happy about things until all is said and done, and so we remained skeptical of the outcome. Around 11 hrs after we had said goodbye to Ruby, we got the update that the surgery was done! We were now shuffled to another waiting room outside the CICU and waiting for what seemed like an eternity (around 2 hrs). We got the word that they were going to be wheeling Ruby to the CICU and that we would be able to see her briefly in passing. When we saw her bed coming we were not surprised or scared. All of our preparation had proven very helpful. I was just relieved to see her face after thinking that I never would again. What I do remember was that I told Dan, "She looks so pale." He said, "Kerry, that's what pink looks like" as he pointed to her monitor. Her O2 saturation level was 100%. Even in those early days she'd never hit 100. Never.

We had to wait some more and we were eventually admitted into her room. It was bright. It was crowded with pumps. We had 2 nurses devoted just to little Ruby. The monitors beeped constantly. But I remember sleeping better that night than I had since the day she had been readmitted to the hospital after our short stint home. In the CICU you are allowed to sleep in the room with your child. I was there to guard over her and protect her as I should have been since the beginning. I knew enough from our research that she was no where near safe. That the next few days and weeks would be the most trying for her, but I felt such immense relief because I was so close to her. I was able to sleep by her side and have never spent a night away from her since.

Still so beautiful. Nothing quite like seeing your child's heart beat from the outside though. :/

The Eve of Ruby's OHS

Well, here we go again... One year ago today Dan and I were preparing for Ruby's open heart surgery (OHS). I don't really know what to say on the subject. I'm sure I'll figure something out as I ramble along. Some families celebrate the anniversaries of their child's lifesaving surgery. Honestly I don't think we'll ever be one of those families. When I look back on that day and the days and nights surrounding it I mostly feel sick to my stomach. But I think I can suppress that feeling long enough to write down what we were doing one year ago to prepare for what was to come.

As I've alluded to before, I believed that Ruby would die during or after her surgery. Dan and I were obsessed with statistics before her OHS, even though we knew that they can not paint a fully accurate picture of what is to come. We looked up the stats for successful unifocalizations and ToF repairs from different hospitals and harassed the cardiology staff at CHOW enough to get some, albeit incorrect, stats for surgeries like Ruby's at our hospital. I knew that the success rate was so-so. I knew there was a very real chance she would die and I'm not a very optimistic person so...I chose to believe that she would. I think I wanted to be as prepared as possible for the worst, even though there really is no way to prepare for the death of your child.

In the days before her OHS Dan and I talked about what we should do with her things; all of the things in her room in the NICU I mean. We knew we would be "homeless" during her actual surgery and that if it was successful she would be moved to the CICU. But in the interum...what on Earth were we supposed to do with all of her stuff!? And have you seen the pics? She had a TON of stuff! We came to the conclusion we needed to unload it the day before her surgery and leave it in the car. That way if she died, we wouldn't have to go through the additionally painful process of removing it. Dan and I talked about this several times, once in front of a nurse who scolded us, saying, "Don't think about such things!" I told her, "We have to think about these things because she might die. How can we not?" This is our life, this is our reality. I have to think about it because I don't want to be going through my little girls books, toys, and clothing smelling her sweet smell and flashing back on all of our memories knowing that I would never get a chance to make any more with her.

So we did empty her room. We cleaned out my milk in the freezer. We erased as much of ourselves from that awful place as we could. And then we waited. I tried to numb myself like I did in those early days. I tried to remind myself that it was the right decision and that it was all worth it...that the pain she was about to endure was worth it. I didn't cry at all in those days. But I did try to think about the things I needed to do in case she died. I remember bringing in my camera from home to get better pictures of Ruby. I knew I would want at least one nice print that I could have for home. I also made my dad take a picture of Dan, Ruby, and me as a family. We didn't have any pictures of the three of us since her first days. Dan and I also tried to familiarize ourselves with what we would see after her operation. We looked at pictures of infants with their chests still open after surgery. During her pre-op we took a tour of the CICU with that sickeningly upbeat PA, who actually said things like "saw open her chest" with a twinkle in her eye and smile on her lips. We saw the tree of pumps, the lifeless bodies, the nervous parents, and simultaneously hoped and feared that we would get to that point.

Family Portrait

She had a cath a few weeks before the OHS. Not much had changed but Dan and I finally understood exactly what her heart looked like. She also had lots of blood work. Some of which couldn't be done because the staff at CHOW rarely have success in that department with our little girl. And can I say here that I HATE blood draws. I know we all do but watching your child go through that again and again and again and again...well you get the idea :( You know, one of the kindest souls we met in the NICU was the cleaning lady, whose name I probably shouldn't post here. She LOVED Ruby and if I could bring myself to take her back to that Hell she would be the only person I'd want to see. She used to sing to Ruby in her own language and Ruby would smile and talk back. It was wonderful to see. And when poor little Rubes was screaming in terror from all that blood work that sweet lady cried along with me outside her room. I'm so glad she was there to watch over Ruby when I wasn't.

I'd also like to paint a picture of Ruby's condition before her OHS. She required more and more O2 to maintain her sats. She was on 5 L of high flow O2 sating in the 60s and sometimes low 70s. She had rashes all over her body and face from her monitoring leads and the tape required to keep her cannula in place (she was an expert on removing it). She needed blood transfusions as well as the increase in O2 to keep her sats up. She was vented continuously and fed into her intestine 24 hours a day. She was tired all of the time. She was sweating profusely from her heart working so hard. She could barely hold her head up and was very weak. She was in heart failure. She needed the surgery soon or she would most certainly die. She was 3 1/2 months old. Dismal, huh?

Anyways, those were our days before her surgery. As for the actual eve we simply held Ruby, sang her to sleep, and left just a little later than usual.

Despite all that she's such a beauty!

Politics...sigh

I love Wisconsin but the truth is I feel betrayed by it's people right now. They have spoken and what they have said in their loudest voice is, "We are impatient. We want more money. We don't care about those in need. It's survival of the fittest." Did I hear that wrong? Someone please tell me I did.

In a few years will people take a good look at what will become of this state and have a change of heart? Perhaps they will notice that their beloved parks now have NO TRESSPASSING signs on them. That their once cherished lakes and forests will either be abandoned monuments to nature or worse gated communities to the wealthy. Or perhaps they will take note of the failing school system that will slowly have less and less money to pay for enriching and necessary programs like art, music, and heaven forbid...even gym! Maybe they will drive past the few are far between free clinics are be surprised by the waiting line of mothers, children, and the elderly that will certainly extend to a ridiculous length...they might even be in that line themselves. Will they fear leaving their homes when the crime rate skyrockets as the poor are denied the basic necessities for life? Maybe they will take their children on a walk to their local library only to find the doors locked and a FOR SALE sign posted for all to see. They might even catch a glimpse of my family whose uninsurable daughter will have easily hit her $5 million insurance cap scraping to get by despite the fact that my husband, by most standards, has a really good job. Everything has a cost. Is your proposed $100 tax cut really worth it?

I hope that these things do not come to pass. I hope that before any real "change" on this scale can occur, Wisconsin will peel back the layers of deception and placation to find what really lies at the heart of Scott Walker and his accessories. I hope that I am merely being dramatic. My heart aches with such hope. Because if I'm right, than the very things I love about this beautiful state will cease to exist and the world I grew up in will no longer be here for my daughter. And frankly that sucks.

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.

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.

22q11.2 Deletion Syndrome

Seriously?! My kid is this cute?!
Photo from Something Blue Images

Warning: This probably should be two separate posts but oh well, this is how I wrote it!

Ahh yes, the elusive 22q Del. I've got to say one of the things that annoys me about this disorder is the confusing aspect of the name. It's kind of like how a square is technically a rectangle but a rectangle is not necessarily a square. All kids who have Velo-Cardio-Facial Syndrome (VCFS) and DiGeorge Syndrome have 22q11.2 deletion syndrome, but not all kids with 22q have both VCFS and DiGeorge. Ruby, for example, does not have DiGeorge because she does not have calcium or immune problems as of yet. She does have VCFS, however, because she has suspected palate issues (velo), several heart defects (cardio), and characteristic facial features that are associated with people with VCFS. Does all this make sense? Probably not, so let me confuse you some more...

Originally people who presented a specific set of problems were diagnosed with having either VCFS or DiGeorge. There are also Shprintzen Syndrome, conotruncal anomaly face syndrome, and a whole bunch of other diagnosis, but for the sake of simplicity (yeah right) we'll stick with VCFS and DiGeorge because those are most commonly, and often mistakenly, used to describe people with 22q del. So back in the day, people were said to have one of these diagnosis. But as medical science advanced it became possible to detect malformations in people's DNA. Whether or not someone had a duplicate or deletion of a chromosome, or portion of chromosome, became possible to detect. And so it was discovered that all of these people diagnosed with VCFS or DiGeorge in fact had the same micro-deletion on their 22nd chromosome. Want to hear this from a source that can probably explain better? Click here. (And If I have any of this info. incorrect please let me know and I will change it)

Why am I telling you all of this? Because sometimes it drives me CRAZY! I'm a stickler for some things and I don't like people saying things are one way if they are another. Obviously I am very forgiving of newcomers to all of this, but it is so frustrating to hear medical professions not know ANYTHING about what Ruby actually has. So doctors, *ahem ahem, cardiologists* Ruby has VCFS which is how her 22q11.2 del presents itself. Please get it straight and know the difference. And while I'm on it...I'm sick of hearing the medical community refer to Ruby as her disorder. She is not "tetralogy of fallot, pulmonary atresia, VSD, and MAPCAs" or "VCFS." She has these medical conditions, but please get it right and put the child before the diagnosis. THANK YOU!

Ugga-Mugga :)

Thought I was done? Got ya! All of that (which turned into a giant ramble) was meant to lead up to the story of how we found out that Ruby has VCFS. So here we are...It was probably Ruby's 3rd or 4th day at CHOW, and we were still feeling our way through becoming parents in a NICU. The day before, the doctors had convinced us to do a spinal tap on Ruby because she had clusters of bacteria growing in a blood sample they had taken. At the time they told us they needed to do the spinal tap so that we could have same day results...we later found out that was a lie and that we wouldn't have the results for several more days. By that time the clusters had grown enough to show that the sample was merely tainted. It was around this time that our trust in some people at CHOW began to waiver. Anyway, it was the day that we were told of the spinal tap results that we also found out about her diagnosis of VCFS.

In days prior to this, Dan and I had spent time on the internet (which can sometimes be a curse you know?) and had found out every awful thing about DiGeorge Syndrome was. This is what the cardiology staff call all forms of 22q del, so that was the only term we looked up. It's not that DiGeorge Syndrome is all that much worse than VCFS, and many websites lump all of the info. together anyways. But either way what we came up with in our frantic Google-ing was, of course, worst case scenario stuff. Like severe cognitive delays, hearing loss, vision impairment, schizophrenia, and about 100 other things as well. I have worked with many children and adults with disabilities so I'm no stranger to this stuff...but I kept thinking "not my child."

To sum, by the time we found out about Ruby's condition we, especially me, had worked ourselves up into a paranoid fit. But I was still pretty numb. I just kept thinking, "she can't have it, she can't have it." And for some reason I felt like the heart thing wasn't that bad, but how could she deal with all of this other crap on top of it! So I was really hoping against hope she didn't have it. But she did and here's how we were told (approximately):

Doc: walks in room while looking at chart "Oh hi there, I just wanted to let you know that Ruby's spinal tap came back negative for infection."
Us: Ruby is in Dan's lap, I'm standing close to doc "That's great, so there's no infection at all? It was just contamination?"
Doc: "Yes, nothing has grown. We will continue to watch it for the next few days just to be sure."
Us: "Ok, that sounds good."
Doc: "Oh, and by the way her genetic test results came back and she has DiGeorge."
Us: "What!?"
Doc: "Yes, there will be someone by later to talk about it."
Me: "What does this mean for her? Will this compromise her heart surgery? Is she at greater risk because of it? Will this shorten her life any more than her heart condition?"
Doc: "I don't really know, I'm not the person to ask about it."

Well thanks for just blurting that out without giving us any kind of real info. on it! And because of all the "research" I had done, what I heard was, "Oh and by the way, your kid is probably going to have schizophrenia, never be able to be around other kids because she'll get deathly ill, probably be deaf, and be severely delayed." And then to have no one talk us through it!? It was right around this time that I think my heart snapped in two. I kept looking at Ruby and thinking, "No, you're so perfect. How could you have this?" And I want to add here to please keep in mind I knew no one who had VCFS, I didn't know how successful and fulfilling and "normal" life could be for a person with it. I'm just trying to be honest about what I was feeling at the time, which was basically torn apart.

Me becoming "unstuck"

It was then that I lost it. I just sobbed and sobbed and sobbed. I could not stop. I think I called my mom and between tears I told her. Dan gave me Ruby to hold and I just felt awful. I felt like I was losing my child, even though I was holding her. Like all of those things that you really aren't supposed to put on your kids but you do anyway, were slipping away. She'd never get married, never have children, never go to college, never be top of her class, and not have many friends because she would be slow and look different. I now know that not only are all of these things possible for Ruby but I have discovered people with 22q del who have accomplished many of these things. As a teacher who loves working with people with disabilities I should have known better than to admonish the lives of people who are so differently-abled. Their lives are no less fulfilling than my own, but I couldn't help it. At that time I mourned. I felt a deep loss. I knew I loved my child but she was not the child I was expecting. She is in fact so much better than anything I had anticipated, but I didn't really know that then.

After what seemed like ages a genetics counselor did come in to speak with us. She elated some of my fears, while at the same time instilling others. It was good to at least talk with someone who could give us the information we so badly craved. I felt a little better after speaking with her, but the safe little cage I had built for my emotions had been opened and all those raw feelings escaped. I can easily say that was the worst day of my life. Not because it was just the day I found out Ruby has 22q del, but because it was the day I felt my world change and began to understand how hard my kid was going to have it in this life; that this was for real and it was going to be painful. I knew that she was going to have a really tough road ahead of her, and that's a crappy thing for a mom to know when their child is only 5 days old.

Gotta love this girl!
Photo from Something Blue Images

And now what? NOW....Ruby is the most amazing 1 year old I've ever seen! She is interactive and expressive, loving and oh-so-cuddly. She gives me kisses and hugs of her own free will. She is bright and demanding, cautious and shy, and just plain the joy of my world :) So I do have some info. on Ruby now, and what I know is pretty darn good. Sure she has some delays, and still won't eat, but she will overcome these things the best she can. Who knows what other symptoms of VCFS she'll have? I mean...some things about her life really do stink, but what can we do about it? I'm going to try to teach her to move forward because this is it...this is the only life she gets so she better not waste it on self-pity. And the same goes for me :)

P.S. Wanna see Maggie's post from Something Blue Images on her photo session with Ruby? Go here.

Summer with Ruby

So many fun things have been going on the last week or two that I haven't had much time to write! Ruby's first State Fair and Irish Fest came and went...both were soooo much fun! I am always amazed at how much fun all of these things are with Ruby (maybe because she gives me the excuse to act like a kid). At the Fair she held but refused to taste some fried cheddar and was so excited to see the billy goats. Irish Fest was also a blast, with the exception of that very rainy Friday! Ruby got to dance to the music and bang on a bodhran.

She is really a HUGE music fan! She always has loved listening to us sing, and has been "dancing" for some time now. Recently she has been trying to shake things in time to music, which I'm sure makes her Auntie proud :) She has also been doing so many new things. She can pull herself to standing pretty easily on low objects, and has used the couch successfully a couple of times. She is also closer to crawling than she has ever been. Tonight I even saw her get on her hands and knees and stay there for a moment! She can transition from sitting to laying and can get back into a seated position all by herself as well. And although she is still really wobbly on her feet she sometimes tries to let go of our hands while walking, even though she would fall flat on her face!

Other news: Ruby has been getting better at vocalizing. She is still not deliberately making consonant sounds but I've heard them once or twice. She is also much louder! I think she has also finally picked up the sign for "me." She can also point to objects in certain books. There are a few we have that she can point out cat, dog, apple, bird, fan, and ball. She can sometimes get tree, sun, moon, cow, light, mouse, bunny, and a few others as well. Even though she is pretty behind in gross motor and verbal skills, she is one sharp little girl :) I hope this doesn't offend anyone but my Granddad used to tell my mother, in describing me as a baby/toddler, "You can't shit her!" As in, I was wise to all the tricks...and I'm pretty sure he would say the same of Ruby.

Hmmm...what else happened? Oh yes, Ruby and my friend and I went on a road trip to House on the Rock! She did so good in the car, I was shocked. She only had a small crying episode after she had thrown up, about 10 min away from Spring Green. The visit itself was awesome...creepy, but awesome. If you know me, you know I like odd stuff (don't we all) and House on the Rock is chock full of weirdness! Ruby's favorite things there were probably all the musical rooms and the carousel...although she also liked all the buttons and the guard rails!

Dan and I also celebrated our anniversary last Saturday. We've been together for over 9 years, and married for 6! Wow, time flies. Both sets of grandparents pitched in so we could see a movie and go out to dinner. It was fun, but I felt like I was going through Ruby withdrawal not having her with me all day.

Well, that's it for now. I'm too lazy to post any pics but the next entry will probably be another flashback in time, and I'll try to include some new and some old with that one!