Birthday Madness!

Well we threw a great birthday party for Ruby last Sunday, despite the flooding my parents' basement suffered. Let's see where to begin...Ruby had a blast seeing all of her family and friends and even decided to take a few steps for the occasion (with a little help from us.) She is constantly wanting to walk around while holding on to our hands. She's still pretty unbalanced though so I think it'll be a little while before she takes off on her own.

Showing off her stepping skills!

She opened presents...OK well only two of them, and then she got really sleepy and cranky and just wanted to cuddle with me. And she glared at some cake. She even touched it but a quick look of disgust flashed across her face. Although she gladly took some of the Cheetos that my mother stuck in it. She even participated in a mini hootenanny after some of the party disbanded!

Napping with Papa (this was before the party actually)

Shortly after that point we noticed she was feeling very warm and after taking her temp (it was 101!!) we gave called her doc. She also developed an odd rash that just disappeared a day or two ago. After a mess of a week we finally figured out it was just a crappy virus. A VERY crappy virus that Dan and I got to know first hand later in the week...yuck.

See...I told you

Anyway, she is fine now and so are we. Thanks to everyone who came out that day. I hope you had as much fun as we did! Oh, and I think my parents took some better pics of the cake staring and all that so if I get them I will post them on here A.S.A.P!!!

Going Home Alone

Well, let me start this post off by warning you that while it is not my goal to depress, it might happen a little bit for some time. I have a lot of memories from the past year that I think it best to work through via the safe distancing-mechanism that is the internet. So before I delve into all that drama let me tell you about today...Ruby's very FIRST birthday!!!

Loving her beautiful reflection

Although I knew a stop at Children's Hospital of Wisconsin (CHOW) was inevitable due to her G/J tube issues, I was determined to get at least SOME fun in. So this morning (OK it was barely the morning but little miss likes to sleep in, ya know?) Ruby and I headed off to Discovery World to check out the fishies and flashy mirrors and other shiny objects that she adores oh so much. Even though we could only spend an hour there it was great. We then had to hurry off to the hospital to get interventional radiology to fix her tube. And after many many tears shed we were done and went home to eat lunch with Granny. After a long nap we went to Great-Grandpa's to eat a yummy cheesecake adorned with Cheetos that her Grandparents made. :) I sure do love those two, they are such sweeties! Ruby opened some presents and we ran home so that I could get off to my cycling class. The rest of the night we pretty much relaxed...which was REALLY necessary after an insane day. And while I am pretty bummed that Ruby's first birthday couldn't be all happiness, I am glad that it was a day spent with family.

Ruby with her Great-Grandpa Tony

Yummy, yummy cake! Probably horrible for us but it tasted sooo good!

Playing with one of her presents from Granny and Grandpaw

OK, on to the meat of the post: I have written Ruby's birth story, so now I'm going to try to write about the choas that ensued shortly thereafter. And hopefully I will be able to do so without completely loosing it! Now where did we leave off? Oh yes, brief moments of tranquillity...well as I alluded to, these were interrupted shortly. I had to go to the bathroom so I asked Dan to get the midwife to help me. She came in and checked on me and then went to the baby. Her face seemed to turn to stone after listening to Ruby breathe. She said something along the lines of, "Something is not right. We need to get her to a hospital now." I remember her being very calm and very assertive. Letting us know when we weren't moving quick enough and that we needed to go right now. Dan woke up my mother and helped me get to the car while the midwife got out her oxygen to help Ruby breathe. (Wow, just as an aside: I am actually shaking right now while writing this. Yikes.)

On the way to Community Memorial I remember being very calm. Probably because I was in shock...that feeling lasted for 4 days. The midwife held Ruby in her arms, forgoing the car seat in order to assist with her breathing and keep diligent watch over her. Little did we know that car seat would not be used for 2 more months. As we arrived at the hospital Ruby was quickly ussured into a room. God, what was I thinking about her state of health back then? Perhaps a little fluid in the lungs, I had surmised. In retrospect Dan says that he knew something far more serious was amiss. I wonder why I didn't? Anyway, as the hospital staff began their examination of Ruby it became clear that they had no idea what they were doing. They did, however, know how to interrogate and accuse us of mistreatment and neglect for having an out of hospital birth. How kind :/

After several blurry x-rays that told them nothing, multiple attempts at placing an IV line, and an ever sharper image of the staff's incompetence, the CHOW transport team was sent for. In the meantime I remember trying to touch my baby, who was screaming bloody murder at her insensitive treatment after spending 9 months of serenity inside of me. I longed to feel her with me once again. The acute separation was physically painful. Phone calls and texts were being made to those close to us. Facebook statuses were being updated. And we waited. I think at one point I went to the bathroom again. I was incredibly lucky that I had minimal tearing. Clearly I was forced into a situation that required a level of movement and strain not exactly conducive to healing after, well...squeezing a human being out of me!

In that scary thing

OK, so Children's came (around 11pm?) and they loaded Ruby into the most horrific looking contraption you've ever seen and with her Papa at her side, they made the trip to what would be her "home" for the next 4 1/2 months. My mom drove with me. I don't remember talking much...that whole shock thing was still going. I think it was really helpful in the first few days actually. I would not have been able to function without it. We got to the hospital and I was wheeled down that long, long, LONG skywalk and corridor from the parking structure to the NICU. (Those of you with kiddos who've spent time at CHOW know what I'm talking about.) By the time we got to the NICU I only had one thought in my head, "Where's my baby?"

We were told to scrub in, and as we started to make our way to Ruby's room the receptionist said only parents and grandparents were allowed in. My midwife, the woman who had been taking care of me for the past 9 months, brought my child into the world, saved her life with attentive care, and was acting as my medical provider (remember I had given birth only 7 hours earlier and had not slept in 2 days) was denied entry. My mother was livid. And as I recall ever since then she had an incredibly timultuous relationship--if it can be so labeled--with that receptionist. I really didn't care...I just needed to see my baby. After a rather intense exchange between Ma and that woman, my midwife was still refused and had to go home. She said she would call me in the morning and stop by.

I FINALLY got to see Ruby. She looked so tiny and scared in that great big warmer. She was screaming and I wanted to hold her but I wasn't allowed to just yet. I remember being asked a million questions. They wanted to give her a pacifier. At first I said no, recalling all of the warnings of nipple confusion, but quickly relented when I saw how much comfort it gave her. It was sinking in that I would not be able to breastfeed, let alone console her, for quite some time. We of course kept demanding answers to questions about what was wrong. I don't even think I knew what everyone was so scared about. She seemed to have an odd cry, and she was breathing with some difficulty, but I didn't realize how low her sats (oxygen saturation levels) were...Hell I didn't even know WHAT sats were!

After the barrage of questions I think we had a few moments with just Ruby and her nurse. A nice young girl as I recall. Odd, I don't remember her name. We had her a lot in the early days...before people started requesting to be with other patients! I hadn't held Ruby since I those moments of quiet at the birth center. And I wanted to so badly...but I remember feeling like I couldn't. I felt like I had to ask permission to hold my child. It was a horrible feeling. After 9 months this little person was a part of me. She and I were one, and now I couldn't even touch her without asking some strange person who we didn't have any connection to, if it was OK to touch my child. That is an awful, awful sensation that I regret any other mother has to go through.

I did touch her though, a little bit. Not nearly as much as I would have liked, but I did kiss her head, stroke her face and hands. We were told by someone, a resident I believe, that her x-ray looked unusual; like something was wrong with her lungs, or maybe her heart. The latter part of this statement was tacked on as an afterthought. Quickly followed by, "but it could just be a blurry x-ray." It was that thought that I clung onto so desperately as we left that night. For shortly after receiving this minute bit of information we were advised to go home and get some sleep. I was shocked I was not allowed to stay. I am still disgusted at this policy. Children, no matter in what state of health, belong with there parents, especially after just entering this world. We were offered the use of a parent sleeper room in a different section of the hospital. An offer which at the time I wasn't aware would be soon retracted. The stipulation was that we had to be out by 7am. Now please remember that we hadn't slept in a very, very long time. And Dan and I had just been through an exhausting labor. For that reason we opted for the comfort of our own home, which, thank goodness, is only 5 min away from CHOW.

"Unusual" X-Ray

And so we left. I kissed my child goodnight, assured somewhat by the delusion that she would be safely in my arms at home within a day. But that denial did very little to comfort me as I was wheeled out to our car. I remember feeling cold and calm. That state of mind was one that Dan and I would come to master in those early months. People have asked us how we did it...how we survived leaving our daughter with strangers every night, not knowing what pain and fear she experienced in our absence. The truth is we had to pretend we had no child. It was as if, the moment we left her room she didn't exist. That probably sounds horrible but it was a matter of survival. Now, of course we did know she was "there." And we did talk about her, but we usually would talk about her as though she were someone else's child...if that makes any sense. She was and is a part of us, but when we went home at night we functioned in a state of numbness that is hard to describe. We tried with all our might to shut off our emotional connection to her when at our house. And in that state we left. For the first time since her conception, we went home without our baby...and it was so incredibly empty.

And there you have it. The beginnings of our ride with CHD and 22q.

Squirrely Girl

Haven't posted in a while so here's an update. Ruby is AMAZING...as usual :) She is standing with help and has even taken a few tentative steps while holding on to us. She gets closer and closer to being in a crawling position but is still not mobile. That mixed with a curious mind equals a very frustrated and squirrely baby. She is constantly ordering us around as though we are taxis, pointing at everything in site demanding to be taken here or there. She remains adorable as she bosses us about so we don't mind too much ;)

Standing Girl!!

Other news: she has cut two teeth which we are very relieved about, considering how cranky she was right before they came in. She has also been far more social with other adults that she is only slightly familiar with. I LOVE being able to visit with friends and not have her scream and cling to me the whole time. It's wonderful. She has always loved kids and seems far more willing to let them touch her than adults. This, of course, is also very sweet to see.

I know it's blurry but I love that face!

We have remained busy as usual. Running around to the zoo, museums, and parks, and generally having a blast. Everyday is an adventure. We also had my sister's shower recently which was wonderful. I seriously can't wait to meet that little man! Uh-oh, little miss is getting sleepy so I better go. Sorry for the limited amount of pics.

P.S. Her cath is coming up next Friday so I'll update on that later.

One Craptacular Day

Well, I'd been hoping that my next post would be more upbeat than the last. We've had a couple of really good weeks. Doing all sorts of exciting things. Our Chicago trip, Discovery World, a few more trips to the zoo, the Botanical Gardens, and CAMPING!!! All of these adventures with Ruby have been so much fun. But today has been a scary reminder of why Dan and I try so hard to make all of these fun days happen. But before I get into the details of the day enjoy some pretty pictures from said adventures :)

Playing in the daffodils

At Mauthe Lake with Granny

A total camping natural!

Chillin' at the Gardens

Now down to business:

Ruby was scheduled for an ECHO at 9:15 AM this morning, and after 12:30 or so we were finally done. Typical CHOW type procedure :( The ECHO itself went OK. Ruby woke up a bit too early, despite my warning them she has an incredibly high tolerance to sedatives, so they didn't get one final shot they had wanted. But other than that it went fine. And so we waited...and waited...and waited. FINALLY Ruby's cardiologist came back to discuss the results.

Now prior to scheduling this ECHO her card had assured us that he fully expected everything to be great. We probably wouldn't have to come back for another 6 months when she would need to have an MRI. But he implied that any intervention this soon after her surgery would be incredibly unlikely. I should have known better. Time and time again this man has shown his inability to be honest about Ruby's condition...and this was no exception. And so, like many times before, he told us the "bad news."

Ruby's right ventricle's pressure was 60% of the left ventricle. A normal person's right ventricle has around 25% of the left. Because of Ruby's anatomy we would never expect to see it so low, but less than 50% is considered safe. Anything above 75% (I believe this is the number he gave me) is incredibly dangerous and immediate action would be needed. So Ruby's number is too high, but warrants no immediate action...immediate as in this week. But within 2-4 months something needs to be done.

Now what, may you ask, is causing this? Well...it could be 1 of 3 things. It could be that her RV/PA conduit that was put in during her OHS to act as her Pulmonary Artery is narrowing. This would mean she needs another OHS, very soon no doubt, to replace it. This actually is not that bad of an option. She will need the surgery sooner or later, and maybe if she has it now she will stay healthier for longer.

Another possibility is that her MAPCAs are narrowing. (Those are the small spaghetti-like arteries that once came off of her Aorta but had been used in the Unifocalization to create the smaller pulmonary arteries that branch off of her conduit to her lungs) If they are narrowing in specific places the docs should be able to widen them using stinting and ballooning while they are giving her the catheritization that will be scheduled in that 2-4 month time frame. This is also not the worst case scenario, but it is a possibility that this would need to be redone again and again.

The final possible cause is what we all fear...that those MAPCAs are not growing. If they are not growing then nothing can be done. We either have to hope that they spontaneously grow (unlikely) or we wait for Ruby to die. I suppose there is the possibility of a heart and double-lung transplant if it comes to this but that surgery has just about a 0% success rate.

So as you can imagine...we've all had one shitty day. Now I know I'm getting ahead of myself. Ruby's doc seems to think that some intervention will be possible, but as I said before, he tends to exaggerate the positive. Therefore I don't really trust much of what he has to say. I'm incredibly disheartened by all of this. I was really hoping we could go a year without having to worry about her cardiac issues. I guess that was naive.

Thinking, Thinking, Thinking

Too much thinking perhaps. Occasionally I spoil/torture myself by dipping into these deep philosophical conversions that happen within the confines of my own mind. I'm having one right now. Tonight's topic is: surprise, surprise...Ruby.

I just mentioned on facebook how I feel bombarded by a myriad of emotions lately. Raging from anger to eternal gratitude for my daughter. I hate that we lost the first 4 1/2 months of her life to heart failure. I hate that I can't feed my child in the way that my body and mind cries out for. I hate that she has not formed better relationships with my friends, due to her long hospital stay. And as I said on FB: I hate, hate, HATE that she will come to a moment in her life when she realizes she is "different." And let's be honest...not in the best way.

Now OF COURSE Ruby will be unique in a thousand wonderful, character-building-type ways, but she will also be different genetically. She will learn in her high school bio class (and most certainly from Dan and I before hand) that she is missing a piece of DNA. And despite our efforts to instill in her a sense that this in no way detracts from her humanity...I fear that she will feel it does. I also said on FB that this came to my attention when we were at the Science and Industry Museum. When we walked through their displays on Chromosomal Disorders I felt like they were pointing a sign at my child, who in my mind is perfect, and declaring her to be something other than this. I felt hurt and saddened.

I know this isn't the best attitude to take about this disorder, and although not a day goes by that I don't feel saddened by Ruby's situation...I rarely if ever have these feelings and concerns when I am in the moment playing with my daughter. Because you see, she is perfect. She is such a beautifully complex and loving girl. With so much humanity and, dare I say it, an eternally beautiful soul. So how do I help the rest of the world to see this? How can I help her to see herself as such, with the world telling her something different?

Betty Brinn and Zoo

Dan and I, and pretty much everybody in the family, have been having so much fun with Ruby lately. When I think back on our time in the hospital and compare it to our life now it's hard to believe. As all of you know who've gone through something similar, there are no words to describe how horrible it is to be in that environment. And now it seems that nearly everyday is an adventure. I want to make every single day of life for this girl as amazing as it can be...God she is going to be spoiled! So at least a couple times a week we do something really fun. Over the last week we went to the Domes, the Betty Brinn Children's Museum, and the zoo. Pics to follow shortly :)

I've been thinking about how lucky I am to stay home with Ruby too. And about how much I just love kids and I've figured out why. It's basically because I've never grown up! You know how they say all children are artists and musicians...and they only stop being them when they grow up. Well those who know me know I've never gotten out of that phase! I also think I'm basically using Ruby as an excuse to do all of the things I like. Such as going to children's museums, the zoo, and the park. And I simply can't wait to go trick-or-treating! OK on the the pics!

Betty Brinn

"Look Papa we're squished!"

"Why won't these come off so I can eat them?"

She's really thinking hard here. About what I don't know.

These were a favorite :)


The Zoo x2

That crazy hornebill was picking away at the wood

Ruby vs. Penguin

"What IS that!?"

She has been doing this clappy thing lately when happy! Funny girl :)

"Yay, Ruby"

Watching the monkeys on "Monkey Island"


Finished off the visit by chewing on some pizza crust...an AMAZING feat considering her aversion!

Nice Weekend...Except for Some Coughing

Granny and Rubes at Noodles


Well most of our little family's plans were pushed aside this weekend to make way for Ruby's and Dan's colds. We didn't make it to the Ulster Project fundraiser which I was really bummed about, but Auntie Casey came over and we all had a really nice time just relaxing and watching movies. Meanwhile Dan got a break and went out with some friends to The Old German Beer Hall. Saturday we were supposed to have dinner with another "heart family" but we didn't want to get anyone sick and stayed in for another relaxing night of movies and family time.



Getting a nebulizer treatment...didn't help the cough AT ALL!




"I like you Papa!"


Oh yes...I almost forgot! We also bought a mini fridge for upstairs. No, we're not having midnight cravings, we've just had enough of waking up every 4 hours to refill Ruby's feeding pump with fresh milk. So last night, for the first night in a LONG time we got a night of, well, less broken sleep : ) We simply place her feeding pump bag in the fridge and thread the tubing though the door, leaving the pump out. The milk has plenty of time to warm up to room temp. by the time it travels through the tubing into Ruby's body so it works great! No refilling that darn pump at night!!!



The glorious, and incredibly cheap, mini-fridge.


And can I just say how much I LOVE this weather! Any day above freezing is considered spring weather in WI. Today we took Ruby out for a walk at Bayshore and she had a blast. She sat in the actual stroller part and not her car seat for the first time which she thought was great because she could finally sit up and look around properly.



Such a fun kid :)




She loved it outside!


All in all a really fun family filled weekend. And a quick Ruby development update: she's been grabbing at her toes like mad, rolled over once from belly to back all by herself, and has been drumming on and with all sorts of objects! I just know she's going to be a percussionist like her Auntie : )
Hope everyone else gets out to enjoy the weather this week!

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