November 27, 2016
On Saturday we moved out of the PICU and onto a regular pediatric floor. The rooms are a bit more private, and the nurses have more patients. Louis' goals now are to gain weight, take all his feedings by mouth, and to ween off the sedation medications. After a heart surgery and prolonged recovery, babies have a hard time taking full feeds by mouth because they get tired very easily. This is normal. One of the doctors made the comparison that eating to Louis is as if you or I just had open heart surgery and then decided to go for a run. It's hard. It takes a lot of work. Mostly, he is just too tired half way through and he falls asleep. We give him time to make his best effort and then the rest goes down his feeding tube.
I convinced Dan that we should start sleeping at the hospital now that Louis' room can accommodate us. And some of the doctors had advised that it would help me get reacquainted with full time Louis care. WHAT.A.MISTAKE. I thought that by staying with Louis, I would feel more empowered to care for him, but it just made me a short fused mama. I think all three of us had a terrible nights sleep. The care on the regular floor is so different from the PICU, and I have grown to really depend on their thorough explanations and undivided attention. Here, I have to ask for everything and the nurses don't feel as accessible. This means he is getting better but it's still hard. And it's just not home.
Louis is now breathing all by himself and his sutures were removed today. His scar looks rough, a wound reopened twice within a month. We are hoping it will just be a mark he can be proud of. And eventually a very distant memory for us all.
My biggest struggle is that it's hard to know when I become a leading advocate for Louis' care. I'm his mom, I know, but when can I say, "no" or, "I don't like that" ?? Can I even say no to a team of doctors that OBVIOUSLY know more than me?
Sometimes I am mad, and sad at the same time. And I don't know what to do with that. Though the last few days have been a breeze in comparison to what we have been through, it is still hard. There are tiny things that I should just let go of, and can't, and there are big things that make me want to yell at someone but can't. I am running on fumes, my sweet baby Louis is keeping me going. He has started smiling at us, and it makes me cry. It makes me cry because he has been through so much and he is still this sweet and pure and innocent boy. I cry because I can't just make him better in an instant. I cry because he is so precious and he is mine.
Comments (6)
Even before reading this I noticed how happy and sweet he looks in those pics! What a gift after all of the struggle. Louis, strong, brave, sweet, and so full of love! For you Nicole and Dan- Hang in there!! I know tht you are, but we are rooting for you!. I also remember how disruptive the hospital was just with rounds and blood pressure checks. Sleep deprivation is unavoidable I think. Hopefully this time goes by fast for you. Hugs
Again, I say, Baby Louis is a very lucky boy. He has two parents who adore him. He is loved by so many people who have never met him, but love him because they love his Momma or Daddy, or both. He is loved because he is a little Boy who needs all the healing love he can get. He. Is. Loved.
What a beautiful smile he has in the picture! So glad to hear he is getting better. What a strong brave and courageous mommy you are! He is blessed to have you!
Ughh. I hate this for you. When Charlie was in the NNICU, and when Steve and I both chose to live at the hospital, it was exhausting. 1) we never left, so we lacked a perspective outside those narrow walls, 2) it takes everything out of you when you can't leave, 3) it feels like more of a roller coaster when you're there all the time. Instead of getting a final breakdown of everything/certainties, you hear all possibilities, and it drives you crazy. 4) yes, say no to doctors if you feel the need to. If you're wrong, they'll blame it on your hormones. Never hold back your gut instinct. Speak your mind. Every time I do so regarding Charlie, I end up thankful that I did. Mothers intuition is strong!
It's a new day!!!! I can see your love in his eyes. You are truely blessed with this special little man.
I cannot imagine how hard this journey must be for you and Dan. Louis is truly adorable, lucky and loved by many. I am so glad to hear he is doing so well. A long journey that soon will be a happy memory. Breathe, you got this. Prayers to all of you.