Day 20: Growth


Growth.. for me and my sons.

Just for today;

I will focus on living in the moment.

I will be mindful not to look into the past, nor worry about the future.

I will promise to put all my energy into being fully present in the here and now.

I will surrender all my fears and worry to the universe, allowing only peace, love and tranquility within my soul.


If I want my boys to grow .. I must promise to grow along with them.  I have to let go of the how’s and why’s and accept there are many things I will never fully understand.  I continue to play the last few months over and over in my mind .. like a book I can’t seem to close.  I battle between surrender and control.. trying to prepare for every situation. But if I can accept .. just for today… to live in the moment .. there can be no fear and no anxiety.  To find peace I have to let go and of the past and accept my worrying will not change the future.  I have to grow… I can do it for 24 hours and then another 24.. and another ..

My boys are still struggling with growth.  Maurice is about a pound less than his brother.  He weighs 860 grams or 1 pound 14.3 oz.  It hasn’t changed much over the past week.  The doctors are concerned and increasing his calories to 26 calories over 90 min.  It is harder to tolerate but we don’t have a choice.  The next step will be to increase his feeding time to 60 min and we will likely do that tomorrow.  They said some of  the fat can get stuck in the feeding tube when it is spread out too long.  After this we would stop breast milk completely and go to straight formulam.  If his growth doesn’t start to improve it can be due to the hole in his heart and it may need to be repaired.  The doctor continues to reassure me that we are not yet at that point, but the thought of him having to undergo open heart surgery is one of my biggest fears.  He still looks so fragile.  He did graduate today out of his giraffe ( giant nicu bed) and into a smaller isolette which was exciting to see and made our room a little more comfy.

Peter is officially over 3 pounds at 1420 grams or 3 lb 2.1 oz.  His feeds are also getting increased today to 28 ml over an hour.  We are maintaining 24 calories because he seems to be doing well with it.  He still has the cyst on the back of his head but they have confirmed it is superficial ( outside of his skull) and should not affect his brain.  The only treatment for now is to keep pressure off of it and “watch.”  This is so hard for me to do, but I understand at this point there is no other solution.  I do not want them to put a needle in it to biopsy it so we just have to wait and see.  It doesn’t seem to cause him pain which is very reassuring.  It is not getting better but doesn’t seem to be getting worse either.

My highlight of the day was the boy’s echocardiograms.  I have been waiting for the repeat scan of their hearts since the last one over a week ago. Maurice’s large ventricular septal defect or VSD seems to be getting a little better.  The nurse couldn’t give me the details but other than that said not much changed.  The cardiologist didn’t read it until late and she didn’t have all the details but we set up a time for me to meet with them tomorrow.  Overall she reported it “looked good.”  That will at least let me sleep tonight.

We have already grown so much together.  My faith had grown becuase of my boys and my heart bigger than I ever could imaged.  For now, we will just focus on day to day .. even hour to hour.. until I have you in my arms again xx Each sleep I miss you more


Update: tears and bad dreams at 4am.. I guess I still have to work on my subconscious 💙 a good affirmation can only do so much


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