|A picture from after your birth intubated in the NICU..|
It is hard for me to look at all those past pictures but they are also a reminder of your strength.
It has been 145 days since your birth and all the strain that followed. Seems like yesterday but also like forever ago. I look at you now and I think about how much you have overcome already in your short little life. Through your struggles, God has worked on my heart, changing my priorities and opening my eyes to what is really precious in life. I know our family is so blessed. I remind myself of that 200 times a day. Each time there is this side of me (that must lie in all of us) though to be angry that I can't "fix" it all and make it all go away. But that did not work with my mom's cancer or my dad's sudden death.. some things are just beyond our control. Jason and I have to find the balance between being your only advocates, needing to find answers for you and letting some questions go.. being patient and trusting Him to help us figure out the future day by day.
Today your sweet sisters were both off at school and we had a bit of quality time together. I think of all those weeks and weeks in the hospital.. alot of time together but not the same. Isabella has just started Kindergarten and Sofia is in preschool 3 days a week. It was a big adjustment for me watching my oldest go off to school from 8 - 3 each day. She loves you beyond measure and wanted to introduce you to all her new classmates. She holds no resentment of how much of me you have needed. It is good for us all though to get into the school year routine. I have such guilt over the disruption to Bella and Sofie's lives over these past months. They have shown the strain and have had some times pushing the limits but I know they will come out stronger. When I was away they would ask me if I was ever coming back and tell me how they knew you were sick but that they needed me too.. now they get nervous whenever I am heading out the door for just a quick errand. But here we are and everyone is doing ok. Routine helps. When I get into a routine I forget what could be looming around the corner..we can't live in fear all the time.
You had a brady last thursday when I had gone to answer the doorbell and came back to find you changing color, not breathing for a short episode. But it resolved and you were fine. That was the first in about 2 weeks time so at least things are pretty calm. Last week the therapist noticed that you were not holding onto things well on the left side. You are still not reaching out and grabbing at objects but if I dangle them in front of your hands you usually can find a way to get them in your grasp. Sometimes the right side of your body still gets really stiff but that is rare to me and most of the time you enjoy your physical therapy. We are still working on strengthening your neck. I saw a two month old the other day holding their head so much more than you can do and it was hard to push off that dark feeling.
As for speech therapy, you are still not allowing us to get much past about 3 mls of water in an attempted syringe feeding... and that is over half an hour of slow drips into your mouth. You just get kinda distressed in the face and about half falls out your mouth and then usually one big delayed swallow. Today the speech therapist commended you on multiple swallows after one squirt of the water..so some improvement maybe? I so want to see you taking at least some of your nourishment by mouth. I am thankful for the science of at least having the ability to feed you directly to your stomach. Between pumping your meals for you, administering meds and trying to prime your pump and doing all the normal mom things of diapers and handling the girls etc I fear we loose some of our time. I am not sure whether I will be able to keep up the fulltime pumping of your meals. My pump had already been replaced once and then yesterday died on me again..obviously even a $400 pump is not cut out for full time use. I will try to keep it up as long as possible because I feel it is one small thing I can be doing to help keep you healthy and fighting off any kind of respiratory issues. We have still yet to hear you cough and there has been some concern about whether you could do it in the case of aspiration or illness.
I am praying tonight for a friend from my choir who is having some health concerns and is in the hospital. I pray the Drs find answers for her and that she is home swiftly. I have been praying for friends who have a new baby that arrived a bit early and is in the nicu and 3 others that welcomed babies this week for the first time. So many sweet babies! I am also thankful for a good friend today that reminded me of how beautiful you and your sisters really are when she came and took your pictures out in our yard. She is really talented and made the girls feel special. Well, you are sleeping again now - so I better turn in. Tomorrow is wide open and will hopefully be a good one.