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!