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!

Catheterization #3

OK, so how to explain... Well, I won't go into all the back story of Ruby's heart conditions (most of you know it anyways) but in case you don't know she has ToF, PA, VSD, and MAPCAs. This was repaired back in November by connecting her little MAPCAs to a conduit (a cadaver's main pulmonary artery) in order to make somewhat normal bloodflow. The little MAPCAs, which now compose her branch pulmonary arteries (PAs) have a couple issues, as discovered in this cath. We knew something was up because during her last ECHO they found the pressure in her right ventricle to be a bit high. At the time they told us it could be one of three things: specific narrowing in her branch PAs, narrowing in her conduit, or that her branch PAs were not growing. It turns out to be the first option, which is the best of the three.

There was a spot on her left branch PAs that had narrowed and so it was ballooned in order to expand it...most of you know this procedure as an angioplasty. She will eventually need a stent put in but for now, she is too small. She also has an issue in her right branch PAs. They are apparently curving in an odd way. This is also a contributing factor to the increase in pressure in her heart, but not much can be done about it during the cath. This will have to be repaired during her next open heart surgery. Unfortunately the ballooning that they did do didn't really help bring her pressure down much. Hopefully, it will prevent it from increasing.

A very dopey Ruby in pre-op thanks to some meds

The good news: her conduit looks great! This means that she most likely won't need another heart surgery for another 1-2 years! This could change of course, and she will have to have an ECHO in a month or 2 to monitor the pressure in her right ventricle. But for now, I will take the good news and be happy about it. The doc told us that of the patients he's seen with Ruby's specific set of defects, she is one of the better cases...so that's great to hear.

The reality is that Ruby's heart and PAs will never be normal or functioning with perfect capacity. She will always need repeat caths, ballooning, eventually stenting, and so forth. But she is doing very well right now and has a wonderful quality of life. Except for the moments when we are stuck in the hospital of course! So overall things are going well...and hopefully we can get out of here tomorrow and back to our version of normal :)

Honest Fears

I don't mean to upset anyone. This is just me being honest. I am aware that some of these fears are irrational, some are even selfish. I've been adding to this list for months since Ruby came home for good. This was not written with the intention of being made public but I want to be more honest on here. I'm sure it is a list that will change as the months and years go by. I also want to explain that I don't think about these things every second of the day. I am VERY grateful for Ruby's life and those feelings are certainly foremost in my thoughts. But these fears do sneak into my mind from time to time, and I think that if I don't write them down they will grow into debilitating obsessions.

I fear...
That I won't have grandchildren
That when I die I will be alone with no legacy of family
That my marriage will fail
That I will turn to alcohol if she should die
That I will let down my mother
That I can not be the mother she needs
That I will waste too many moments on worry (funny to worry about worrying)
That I will never see her walk down the aisle
That I will lose what little faith I have
That I will give up
That I will never get to go to a parent-teacher conference with her
That she won't be able to Irish Dance
That at some point, we won't be able to cover her medical expenses
That she will not be able to make friends
That she will be teased
That she will feel pain
That she will not take pride in what sets her apart from others
That she will be psychologically damaged
That it isn't worth it for her to live
That I will make the wrong decisions in her treatment
That there will come a day I will never see her smile again
That I will never be able to see her first drawing
That I will not be able to walk her to her school
That she will never go sledding
That she will never ride a roller coaster
That she will suffer a stroke
That she will never know the joy of eating
That there is no heaven
That I am raising her as if there is no tomorrow
That there is no other conclusion to her journey other than an early death
That she will die slowly and painfully

Diagnosis Day

Back to my "One year ago" series...

So it's day #2 of life for little Ruby. She's still at CHOW and Dan and I are home. It's probably 6am when I first wake up. Now, I'm not allowed to go upstairs yet so I yell up to Dan, who didn't fit on the twin bed downstairs. He says something like, "It's only 6. We just went to bed a few hours ago." And I say, "I know but I have to see her." He tells me I need more sleep so I reluctantly lay in bed staring at the ceiling for another hour or two. At that point I wake him up again and he relents. We start getting ready to go. I bring a couple of kids books and a maybe a stuffed animal. I didn't bring any clothes or much else because I was sure we'd be taking her home that day.

Dan drives and gets me a wheelchair as we prepare to enter the hospital. In the days to come I remember us getting choosy about the wheelchairs. Trying to get dibbs on the few adult-sized ones that weren't meant for overweight people (those never maneuvered well in the tight spaces of the NICU). He returns with a decent one and we're off. Poor Dan. He's not only had limited sleep but he's got to push me through that long skywalk, part of which is uphill, all the way to the other end of the hospital!

But we do arrive, and as we do we are promptly reminded to scrub in. So we scrub, for a full 2 minutes we scrub. As the months wore on and we realized how lax the doctors were--we saw more than a few doctors walk right into our child's room after being in other parts of the hospital without scrubbing in before entry--well those 2 minutes of scrub time turned to 30 sec or so. After our hands are squeaky clean we rush off to Ruby's room. That same routine, for all those days was repeated again and again. And every single time I turned the corner to the NICU my heart lept. I could feel it pounding in my chest with anticipation at seeing my baby. I smile as I recall those moments. I remember Dan and I talking about how everyday as we pulled into the parking structure how happy and excited we were to see her. To hold her and kiss her and read to her. We just couldn't wait to be with her and soak up everything about her.

Priceless Moments

That day, when we got to her room, we couldn't go to her right away. We got to the opening of her room but there were two women inside with a large machine. They were doing an ECHO. They said they couldn't tell us much and needed to concentrate. We waited patiently and calmly. I still didn't think about her heart. I don't recall if they said why they were doing the ECHO but for some reason I didn't make the connection to her heart. As soon as they were done I rushed to her side and had forgotten they were even there at all. She was so perfect.

Some time passed. I believe we held her and changed her diaper and so forth. Dan and I were smitten. Our faces beamed...unconcerned with the setting and situation when she was in our arms. I do remember telling my mom the thing I hated most was not being free to talk with her, read to her, and sing to her like I would at home. I said, "Everyone will think I'm crazy if I start reading to a 1 day old baby." And she told me I couldn't let that bother me. I was her Mama and could do whatever I wanted with her and should do my best to ignore everyone else. So I did. I never let that bother me again. The first book I read to her was Breakfast of Champions. I'm sure the nurses did think I was nuts for that. But it's not like she could understand the words. She just liked the sound of my voice, and I needed to read something funny with all that was going on.

There was one activity that I was introduced to that day that would serve as a focal point for me while Ruby was hospitalized: PUMPING. Oh God, how I hated pumping. The lactation consultant informed me that I better get going with it if I wanted my milk to come in and stay in and so we went off for a pumping tutorial in the pump room. My mom came with me, as she would on many occasions to keep me company and ask the right questions. She was great, the lactation consultant I mean, in fact the whole staff of them were great at CHOW. They were some of the most compassionate and knowledgeable people on staff. We always joke that the people at CHOW we liked the best were the cleaning ladies and the cooks! But the lactation staff and the OTs, PTs, and Speech staff were also top notch.

So cute!

Anyway, I was pumping along and we hear a knock at the door. It's Ruby's nurse. She says that the cardiologist needs to speak with Dan and me and I had better get back to her room. My mother urges me to hurry and says she'll clean up. She says, "it sounds serious, you need to be there to hear it all." I, still in my numb state of shock, remain calm and clueless. And so I walk back to the room and see a group of people mulling about. Dan is sitting. There are a few doctors, one of whom will become Ruby's cardiologist, and my father is also there. I enter the room and hide in the back close to Ruby, who I think was asleep in her little warmer. I remember standing...but I doubt that I was because I was still sore from the delivery. Maybe I want to remember myself as standing because that would mean I had more control or something. Odd...

So there we all are, assembled and looking at each other. The doctor who looks like he's in charge starts to speak. Your daughter has a serious of heart defects...Tetrology of Fallot...Pulmonary Atresia...very serious...missing her pulmonary artery...series of open heart surgeries...chance of genetic syndrome...and the one thing he said that always sticks out in my mind, "If you are going to have a heart defect, this is not the one you want...she is on the worse end of the spectrum of heart defects." Oh great. We asked a lot of questions. I was still very very calm. I was worried about that mention of a syndrome.

"What's that?" I asked.
"DiGeorge Syndrome." He simply replied.
"What are her chances of having that?"
"40%"

I asked a few more questions about it. But he evaded them, explained that most likely she doesn't have that. I remember thinking that 40% is a pretty high chance...I wouldn't describe her chances of not having it as "most likely." I was barely concerned about her heart. I don't know why. I guess I just thought, "they'll fix it, then it will be done." To be honest Dan and I didn't even have a minor understanding of what was wrong with her heart until weeks later. And even then new information would pop up and we would say, "What?! You mean THAT'S what her heart looks like!?" It was very very difficult for us to fully grasp the nuances of her heart condition. Now we can draw you a picture of her heart before AND after surgery, without any visual aides, mind you ;) But back then we knew so little.

A snuggly baby is like a tranquilizer

The rest of that second day flew by. We snuggled, I breastfed Ruby with some success. It was always a battle to get her to eat enough. We became experts at using the breastfeeding scale. Weighing Ruby before and after every feed to see how much she'd eaten. She had a lot of problems with choking while eating too, and so we had to be very cautious of that as well. She didn't have reflux yet...that came later. And all things considered the doctors said she was doing very well. She had an NG tube to supplement her feedings so that should could get the nutrition she needed. And she was off of the oxygen that she had needed the night before. The doctors implied that she would probably not need any since she was doing so well off of it. They told us that she would be able to go home probably within a week after she had "gotten her feeds down."

Before we knew it we had to go. It was late and we needed to buy a breast pump. We hadn't bought one because I had planned on exclusively breastfeeding Ruby and I was going to stay home. So we left at a relatively early time and ran to Babys-R-Us. When we got home Dan broke down. That was his day to lose it. Mine would come soon but I hadn't gotten there yet. I'm sure I cried a little, but I wasn't in full freak-out-mode. I was still numb.

Then the internet searching began. We looked through the confusing little CHD booklet the doctors had given us and Googled the names on the pages the cardiologist had circled. And we found something. An article about a little boy who'd been missing a pulmonary artery and now had one. He was 4 and doing well! Dan emailed the author of the article to get the mother's name and explained our situation. And over the next few days we came in contact with this mom and she showed us a whole community of people who we would come to know so well...even if only through the internet. Without that network of parents I don't know what we would have done during Ruby's time at CHOW. We went through some rough times with some of them (some people really don't like atheists and well...Dan is one) but most were incredibly kind and gave invaluable advice to us. I'd like to add a big old THANK YOU to the CHD community right here :)

After searching and searching we went to bed. I disregarded the no stairs rule, because I needed to sleep in bed with Dan that night. We held each other close and tried to build ourselves up for the next day. We talked about how beautiful Ruby was and how she was strong and would be fine. And eventually we fell asleep.

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.