I've been reading back through the earliest blogs and I am certainly surprised, not at my spelling or glaring grammatical errors but at MY lack of understanding the magnitude of our situation(s). I think that when you (and by you I mean me) are smack in the middle of a crisis (most possibly the biggest of your life) you just cope with what you have. It wasn't until after that I realized how sick I was during my time at Foothills and I certainly didn't grasp the magnitude of Braeden's in utero issues. Don't get me wrong, I was terrified but I don't think I ever let myself truly believe that he wouldn't make it, or that he couldn't. I could have been so terribly wrong four times now. I guess that is what is shocking, the numbness that you feel and the bubble that you fit around yourself for protection of your mind and spirit. I certainly was in great denial when Braeden had the sepsis, and this was even asking the Dr if he would make it and she couldn't look me in the eye. I guess the possibility was always there of losing him (and still is really) but when I read back on those earlier days it strikes me as somewhat unemotional, which is certainly NOT what I was feeling. I didn't absorb that Braeden was one of the most complex cases when he was born nor did I realize that his little life was going to bring me this much heartache and joy all rolled into one little man.
I remember meeting Jaime and her husband Mike for the first time at the lockers in the NICU and thinking how I just wanted to give Jaime a hug because she looked so stricken. It turns out it was kismet that we met and our sons (both our third) were roommates for a short while, but I just remember thinking how stressed out they both looked and could see the pain in their eyes. I am going to assume that was me when we first got there as well, I just didn't know it at the time!
Some of the most commonly asked questions I get throughout this is (I know I've mentioned this before), "How are you guys doing?" and "How do you do it?". For the first I am really at a loss, I don't know in the moment how we(I) are(am) and I really don't know what answer people want to hear. When Braeden was at his sickest people would ask me with a hopeful smile and I wouldn't know what to say, I certainly didn't want to ruin anyone's day! How do you put into words that your child's life is hanging by a string and you have no way to prevent that string from snapping? I would start to tell people the truth and would see how it would upset them and I really didn't want anyone to have to experience my pain or try to put into words how I was possibly feeling at the time. I think one of the biggest (hardest) things for people is how long he's been in the hospital for. I couldn't seem to convey to people that he wouldn't (and won't) be coming home anytime soon. How do we do it? I don't know, you just do what you have to do when life hands you some speed bumps (or in Braeden's case a friggin mountain). I get up each day and I put one foot in front of the other, that is how I do it. Do I feel as though I am doing all I can? Nope. Do I feel that I am giving Braeden all he needs? Nope. Am I being the best Mom I can to Torin and Rylan and the best wife to Mike? Nope, nope, and nope, but they all love me and they are all going through the process with me. That is how I view life right now, a process.
The one thing that is missing the most from the blog is the outstanding support and overwhelming love and acceptance that you receive from the nurses. I was so blessed with the Labour and Delivery Nurses I had at Foothills, both on the 5th and 4th floors (Antenatal). I wish now I had taken the time to write down their names to thank them all personally. They were so kind to me and followed me after I had B as well, coming over or upstairs to offer me supportive words and hugs. I don't remember much of my hospital stay now (and it would be a lot less without the blog) but I do remember kindness, so much of it.
I really thought I had been through a NICU experience when I had T but the five days that Torin spent in the ICU was not really a preparation for a life of 102 days. 102 days that I would never want to repeat or wish on anyone but 102 days that I wouldn't change. It is simply due to the NICU nurses that I made it through this period as unscathed as I did. They made me laugh, made me annoyed at times, and yes, some even made me cry (but not always in a bad way). I found love and acceptance with humour and most certainly sarcasm, oh, lots of sarcasm! I also found out that I can be out smart-assed as well. In all seriousness it takes a very special individual to work with an infant on the brink of life and death. They are the smallest beings and in need of the loudest voices when I comes to care and attention. The nurses take their jobs very seriously and you know that they fall in love with 'their' babies too. We received tireless commitment and open honesty. Braeden definitely had his difficult moments (sometimes hours) but each nurse there had their tricks on what would work with him and the biggest thing was patience. Oh the patience. The nurses are patient with crazy, emotional, over protective parents, they are patient with the Dr's and most importantly they are patient with their babies. They wait for the babies to tell them what they need and then they will do their darnedest to provide it. I won't forget the sacrifice Trish made to come in on her day off to attend a meeting about Braeden, sacrificing her own time. I also won't forget how they went out of their way to still make Christmas special and memorable in a good way. I hope for those of you reading this that you know how much you've touched our family and Braeden and just how much my sanity relied on your patience. I've talked in length at times of the amazing Dr's and my respect for them but nothing comes close to the respect I feel for each of those nurses and what they sacrifice to be there and present in their jobs each days. Thank you seems inadequate to those that have offered so much to us over the past few months but those are the words that I can't say enough, THANK YOU!
I am also thankful that the trend of great nurses is continuing! When I think about another 3-6 months in the hospital it doesn't really faze me, it's not something I can change. I know B is where he needs to be and I am at peace with that. Wouldn't I rather he be home? Certainly but I'm not going to be in denial, he needs care and will most likely need a great deal of care for the rest of his life. I am putting positivity out to the universe that we will continue to have fabulous nurses, RT's and Dr's looking out for Braeden's best interests. I'm not looking for a smooth road ahead, just one of fewer pot holes would be nice!