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.