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!