Day 60

Upon hearing the news that I was pregnant, family and friends, even strangers, wished me well and stated a phrase that was becoming familiar - "your whole life is going to change. I nodded and smiled having absolutey no concept of what that trully meant - until now. We all have many roles we play each day. Maybe you're a mother, daughter, sister, granddaughter and friend. You go to work and you're a doctor, a teacher, a writer, or a construction worker. Those titles bind you to how you act for the hours you're required to be at work. Whatever title you hold when you show up, you act accordingly. You know what the job calls for and what's expeced of you. Teaching is sort of like being on stage, except there is no down time, no intermission and certainly no bathroom breaks. Regardless of the long night you might have had, the cold you feel coming on, the migraine throbbing inside your head, - when the school bell rings in the morning and the shuffling of feet comes nearer your classroom door, when that first child's face peeks in -you're on. Your "audience" will accept nothing but your very best performance - sick, tired or otherwise less than feeling up to the immense task of making a difference in the lives of your students. There are no cubicles to hide behind, no computer screens to stare into hoping 5 o'clock will soon come. There's a drive within that pushes you to shake off the sleepless, long night you've had or swallow the Excedrin and ignore your throbbing head, and do what you have to do. I know what I have to do, what I want my students to accomplish, there's a plan in place. Generally my plans are carefully laid, I'm prepared with materials I need and despite my best efforts sometimes the outcome of the lesson isn't at all what I envisioned it would be. There are things you can anticipate, such as knowing your students needs, their strengths and weaknesses, and what they are supposed to do in each subject area for their grade level. Where are my students right now, where do I need to get them to be, how am I going to do that? You plan accordingly but what they do with the tools you give them, is out of your control. We can only orchestrate as best we can, and hope we hear a song we love. Reflecting back, some lessons have resulted in what can be compared to dogs howling verses perfect symphonies. Other times when I'm a little less prepared, flying by the seat of my pants, I am happily surprised at the melody I hear. You really never know and that is the most challenging part for me. I have to remind myself to have a plan, be prepared but ultimaltely be flexible. Adjustments have to be made in the moment sometimes.

Finding out your pregnant changes everything. The plan is to eat well, take your vitamins daily, rest and take care of yourself while your precious baby (babies in our case) that you love and would give your life for grows inside of you. You plan and prepare all that you can but in the time it takes for your water to break you have to learn to be flexible realy quickly. That "plan" you and your family and your doctor had just went sailing out the window. Suddenly you're in the car, dashing through lights, praying you make it to the hospital in time to do what's best for your babies. All that happened 60 days ago. 60!! It's hard to wrap my mind around that fact. For 60 days I haven't had a decent night's sleep and I've spent more time in a hospital than anyone oth of them should have to. On the bright side I've been so blessed for every moment I've had with them thus far and I am impatient for their discharge.So where are we now? Lucian came off the nasal cannula but still has episodes of desaturation. They seem to be related to his feedings and he might have reflux. He's always been a good eater and is up to 28 ccs or millileters every 3 hours. He's about 3 and a half pounds. His cheeks get chubbier each time I see him. I'm more comfortable and confident when holding, changing and feeding him. He has a rather large hernia that will need to be operated on before he can come home and we still need to consult witht he plastic surgeon regarding his septum and what we can do to fix it. I'm infuriated and saddened every time I see it and then I look back at their very first pictures and I see his perfect little nose and those feelings are amplified. How dare they not check beneath his mask or worse - check and not alert someone that he couldn't possibly keep that type of mask on without PERMANENT damage as a result. Thankfully he is doing well, so well that he was moved to "step down", the place preemies go before going home. It's still within the NICU but towards the door - the door to family and freedom and love. I just want them home, I envision walks in the park in the sunshine.Emma-Sky is so adorable and has a lot of personality, she's feisty and has a lot of spunk. So when she's lathargic and uncomfortable and her saturation is in the mid to high 80s we know something's not right. I wish that the doctors would take our concerns much more seriously and not do minor things to pacify us only to realize 3 days later that there is actually a problem. Last week I noticed Emma's stomach getting larger and larger, more and more distended. She was visibly uncomfortable and crying a lot more than usual.Most concerning wdre her sats, mid to high 80s is absolutely an indication that something is not right. Being that her belly was so large I thought maybe her lungs were being compressed. To be on the safe side I asked the attending doctor to come and have a look, explaining that I knew something wasn't right. He assured me that mid to high 80s was a fine saturation rate and although her belly was full, it was soft. He lowered her feedings from 10 ccs an hour over 4 hours to 9. I didn't feel better about the situation but really am not in control of what they want to do. I am an advocate for my children and do insist that I am heard. I wish they took the parents' concern much more seriously, especially when our concerns have been valid each and every time we have voiced them. THat night Emma's belly was more and more distended and she vomitted. Then the decision to stop feeding her altogether was made. Does she have NEC or some other infection?? The doctor felt her gut just needed a rest and chose not to do a spinal tap or urine testing. He did order an xray which shows bowel wall sweeling, the first negative x ray she's ever had. Next day he ordered a blood culture after her glucose levels wouldn't stabalize. She also began broad spectrm antibiotics. Now we know she has a staph infection and is septic. She will be on antibiotics for ten days at least. This is the first time she actualy has an infection and we failed to do the urine and spinal tests before she started getting antibiotics, so we can't be certain that those test results (negative) are trully accurate or if something is being masked by the antibiotic. I am sick with worry, I haven't slept since we first thought she was sick and there's nothing I can do which makes me crazy. I keep thinking it's in God's hands or God has a plan which has yet to be revealed to us and I wish I could say that brings me comfort but it doesn't. Unless the plan results in both of my babies coming home unscathed after all of this there is nothing that will bring me comfort again. There is a heaviness that comes with the weight of fear that is unbearable, making each breath I take labored, the anxiety all consuming.