What a day.
While a picture can speak a thousand words, looking at this snapshot I’m drawn to focus on everything that isn’t stated or shown. Simon, while appearing frail, doesn’t show how small he truly is. His hand is no bigger than my thumb nail with each finger barely equaling the circumference of the ink cartridge of a ball point pen. Simon is tiny. A perfect little body packed into twelve inches (literally) of space. This photograph doesn’t show all the hours of work, dedication and perseverance that everyone supporting Simon has and will continue to put forth. While this picture says much, what it doesn’t say is even greater.
Today was necessary. I awoke and called to get a status update from the NICU and then began the day with a doctors appointment and much needed family time. We have spent the day without rushing about to accomplish the ever-growing list of must-dos. Instead we have talked, played and cooked. Rob joined in with some cleaning too. We, as a family, desperately needed the opportunity to reflect, relax and regroup. The next months are going to be difficult for all of us and days like today will be pertinent to our strength and survival.
Simon Gabriel’s Day
Now for the updates that one couldn’t wait to read!
Strength. The bond between mother and child is amazing. There’s a positive flow of encouragement through difficult times, tears shed over many events and most of all a never-ending supply of strength. Today showed us just how important strength is through our own situation.
Yesterday Simon went through a five-hour procedure that was vital to his survival. He received a PIKK line that will be used to supply nutrient rich liquids into his tiny body. The stress of the procedure was felt through the night with a few ups and downs in his stats. By this morning, however, he was back on the mend and doing well by all mechanical accounts.
Between the hours of eight and ten, it was decided by the Neonatologist to remove the ventilator. The next step in the series is a CPAP which promotes positive air pressure. Out came the tubes that supplied a few days for Simon’s lungs to grow in strength and on went the CPAP mask. He took his first breath all of his own accords today. While the CPAP provides positive airway pressure, it doesn’t make his lungs work. He had to make that choice himself. He did. The amount of oxygen he’s received has varied through the day, but for the later half he has been around 29% oxygen.
After yesterday’s procedure, Simon lost a bit of blood. His red blood cell count was down today and received his second transfusion of blood. He’s done so much better since receiving that. We can’t be more thankful to the donor who offered a bit of himself.
All in all, it’s been a day of strength. Strength for the family as well as for Simon. It takes every ounce of energy I have to not jump in the car and make the drive there. I miss seeing Simon, even if through an isolette most of the time.
He’s doing so well and I’m so proud of you for understanding how important time as a family is to you all. You’re such a remarkable woman Mysti, a true inspiration to all of us with your courage and strength.
Little Simon is so beautiful. I’ve begun to share your story with my mother and we’ve looked so closely at his pictures. Left wonder, are those his feet below the blanket level? I wish I could send you my camera so we can get some great photos instead of the camera phone. *grins*
He’s so tiny! I am so glad to hear how he’s doing. You’re most definitely in our prayers. All of you.
Best,
~Jen
I am glad to hear Simon is doing better. Mysti, you are inspirational to all of us. My prayers and thoughts are with you and your family at this challenging time.
Those are his feet! Or his foot rather. He was bundled tightly for light therapy to bring his biliruben levels down. Out-stretched is his little foot that he kicks towards me when I talk.
Saturday should bring with it new pictures – and hopefully better pictures too. I still have a few left that I can share, but for tomorrow – we’ll just hold the suspense!
He is definitely my little trooper. I’m very proud of his accomplishments to date.
I’m going to jump out of my lurking comfort zone again.
I LOVE that you have shared your photographs with us, as now we can see how healthy he is. I hope that you will continue to do so.
Pictures of Simon will make Simon a reality to Jaden too and will help develop a continuing relationship, and strengthen the bond between brothers.
Someone made the comment about you keeping this blog for Simon to read when he is older. I think that is a wonderful thing to do. I know I look back on my stuff from time to time.
With this in mind I want to emplore all the lurkers who are part of your fan base to acknowledge their presence with a short word so Simon and his family can be aware of how many of us there truly are who wish them well.
Wow, he’s pushing his way right through! Go, Simon! You too, Mysti. You’re a real strong gal! It’s been an honor getting to plurk with ya and now see your miracle baby overcoming all this he faces each day. With you as a mom, I think he’s going to be just fine, though! 😉
*smiles and prayers and big ole hugs*
Michele
You’ve got me crying tears of joy into my coffee. I continue to be amazed at your strength and wisdom in dealing with the reality before you.
It is good to know that Simon is growing stronger each day.
You and your family are in my thoughts.
Tears of awe accompany my reading of your updates. Your strength is an inspiration to all who struggle. God bless you and little Simon.
Missy
Aww Mysti- I went out of town suddenly and prayed for you and Simon the whole time. Bless his little, beating heart! I too can hardly believe that you aren’t pregnant anymore. He is beautiful Mysti. Just know that you are never far from my thoughts and prayers. Love, Karen
Mysti, Remember that you are always in our minds, prayers. I know that this is a struggle. And I hope that you know that we are here for you no matter what. God bless you, Rob, Jayden, and Simon. Love you. Love, Catherine
I don’t know why I always put a Y in Jaden’s name. I just do.
Mysti!
I had no idea! Congratulations on Simon’s arrival! Remember he chose you for his mommy for a reason!
Take care of you and yours
Laurie