As I am sure you picked up from my last blog post, last week was rough. Wednesday was the worst but Thursday wasn’t much better. Briahna was still struggling badly with oxygen and to make matters worse, her blood count was low and the doctors thought she might have an infection. So besides having to be bagged twice on Thursday due to low saturations, she had to have a urine culture (which requires a catheter), a complete blood count (or CBC for short), a throat culture, she started preventive antibiotics, was given Ativan (a benzo used to treat anxiety) to calm her, and they increased her ventilator settings. It was a tough day. From all these tests they were able to determine that her blood count was low so she would need a transfusion and that she had, what they believed to be, an early onset of pneumonia so they inserted a a peripherally inserted central catheter (or PICC for short) to start a 7 day antibiotic. Like I said, it was a tough day.
But unfortunately that wasn’t all, the hospital staff kept insisting to me that we sit down for a care conference. If you’re not familiar with a care conference let me explain. Basically a team of doctors (in my case it would be a Neonatologist, Neurology and Neurosurgery team) sit down with me at a table and explains everything they believe to be wrong with my child, what her prognosis would be and how they will treat her. This is a good conference to have if you have questions or are confused by what is going on with your child. However, I am not. I know my daughter is sick. I know how sick. I know what her prognosis is and what little chance they give her to function. I know it because I see her daily. I know it because she is my daughter. I know it because every day that I am in the NICU at Children’s someone makes sure to tell me. They make sure to tell me the facts, their prognosis, their opinions and just to be sure I get it, they follow it up with more negativity. As if to kick me while I am down. So when I asked what the purpose of a care conference would be, they made sure to let me know it would be to make sure I would want to continue to intervene. ARE YOU KIDDING ME? We are here again? That means this hospital wants to sit me down, beat me down, and then insinuate that, because they question my daughter’s quality of life, her life may not be worth saving. In fact, they talk to me in a way that makes me feel like if I chose to continue her life, I am a bad person. UNBELIEVABLE. Now don’t get me wrong, I know the doctors have a job to do. In fact, it is because of that job that BOTH of my children had a chance at life. Without them, I would have lost them both. I am eternally grateful to these doctors and what they have done for me, my children and my family. What I have a problem with, however, is that they don’t seem to realize that I have a job to do too. My job, as her mother, is to fight like hell for her. It’s to stand up for her while she can’t stand up for herself. It’s to fight the negativity that surrounds my daughter and find any way that I can prove these doctors wrong. Yet, for some reason, these very doctors that I respect for doing their job don’t seem to respect me for doing mine. Because of this I decided it was time to set some boundaries. So I told every nurse, nurse practitioner and doctor that I have spoke with that this care conference isn’t happening. I explained that I will not sit around and listen to anymore negativity surrounding my daughter. That I know what the facts are. I know her risks and I know her prognosis. I don’t need to be told over and over and over again. So unless they are going to sit me down to discuss solutions, we will not be sitting down at all. I have already told them to intervene and unless I tell them otherwise, they no longer need my permission. It is not my responsibility nor my right to take life from Briahna. So I will not discuss it any further.
So now I am refreshed. I have made the decision to remove negativity from my life, at least for today. So with the being said, I am going to take some time to highlight the positive milestones that both of my babies have hit this past week.
Briahna – Since the coding, and all the tests, she has reacted positively. Her oxygen percentage has been as low as 55% at times. She still needs some extra oxygen throughout her assessments and other times during the day but she is consistently lower than she was last week. The top of her isolette has been popped which means she is maintaining her temperature so she no longer has to be covered. I can just touch her. Without putting my hands through holes or working around tubes or wires. I can kiss her head when I want, get close to her when I talk, and be there for her without all of the separation. Lastly, she is growing. Man, is she growing! I was going to blog last week about her hitting 4 lbs. but before I had the chance, she flew through the 4 lb. mark and has hit 5 lbs (She is carrying extra fluid though so the nurses think some of the weight may be fluid rather than actual weight). This is the best thing for her lungs as it allows them to grow, and will (hopefully) allow her to begin to breathe better. Throughout all of her struggles, she is showing these doctors that she is going to progress as quickly as she can, the best way she can and we are so proud of her for that.
Braxton Braxton has had quite the accomplishments as well! First he hit the 4 lb. mark last week too! He is still there. He is roughly 4 lbs. 7 oz. and looking oh so handsome. On Wednesday he was placed back on the high flow cannula and he has done great. There were no incidents that took place that concerned the NPs or the doctors to make them feel he wasn’t ready. That same day they popped the top of his isolette to see if he could maintain his body temperature. He did so well that the next day, I helped them move him in to a crib. Yep. That’s right. A real big boy crib. Then today they decided to take him off the high flow cannula and move him to the regular one liter cannula. Which means, if all goes well, this will be his last hurdle for oxygen. Since he is doing so well with everything they are discussing bottle feedings for him as early as next week!
There is so much to be thankful for right now with our babies. Every day we have with them is truly a blessing and there are times when fear creeps in, that it becomes easy to forget that. I am doing my best to refocus my energy on all the positives we have going for us, to celebrate every milestone they have (big or small), and to love them deeply each day that they are here. I refuse to let these doctors and nurses take time away from my children anymore. I refuse to let them suck my hope from me. I refuse to let them crush my soul. I will spend every waking moment of my life fighting for both of my children and with that, I hope to help them become their best them. No matter what that means for me or them. I love them with all of my heart and soul and that love does not come with limits, stipulations or strings attached. It is whole, it is pure and it is real. It always will be.