One Month Mark

Can you believe it? We have been home for a month now. Wow, now this is a countdown I can enjoy. It is much nicer adding up the days at home than racking up the days in Riley. However, I just hope this countdown goes to infinity and beyond! It just been wonderful being at home and as a family. Sophia is already so different than she was in the hospital. She is so lively and happy. She is making more and more improvements as the days pass. She grabs and holds and even switches hands with her toys. She rolling unto her sides more. She loves being picked up more. She is even getting a little more sturdy with her neck control. Oh and that smile, that smile melts my heart. She has the best smile. I love when I smile at her and she smiles back. Best Moments! We are starting to settle into our routine with the nurses and just being at home. Things are getting easier and it is truly becoming our new normal. I am getting really crafty at packing up our stroller. The double stroller was the best purchase I have EVER made.

I have that thing backed up just perfect for our outings. We also finally broke down and bought a mini van. My little car just wasn't cutting it. We were like sardines with all of her equipment in there. The van is amazing. We definitely utilized every bit of space in there as well at least in the van John and I can both comfortably sit in the car together again with Sophia. The little things I swear never cease to amaze me anymore.

 We made our first family trip on Mother's Day. We made the journey back to my home down to spend my first mother's day with family. The trip went wonderfully. It is definitely time consuming packing and unpacking and setting her up but it was worth it to see how happy my family was to see her. It was just so great to see her sitting in my grandma's living room and to see how excited and how much in love they are with Sophia. It was a great day!

Yesterday, we had our one month check up with pulmonary. Sophia had to get her vent and lungs checked out. I was really nervous about this appointment in particular because what they told us would determine a lot for Sophia. When we got to Riley, we loaded up the stroller and headed up. Sophia does so great with transport. Once back with the doctor, I started asking the heavier hitter questions. I even popped Sophia off her vent during her weigh ins to show them what she's got. However, I got a little nervous because when I connected her back she started breathing just a little heavy. So, Sophia and I had a pep talk and I told her it was important to get it together and impress the doctors. And that she did!! The doctor finally came back in and said I have a question for you. Would you like to start trach collar trials and can you start it now. I was like uh yes, I would love too!!! It is hard to believe I actually got the answers and results I wanted yesterday.  Sophia gets to start trach collar trials twice a day for 15mins and then we increase by 15mins every three days until we reach two hours twice a day then we hold there until we see the doctor again on June 7. On June 7, we will be talking about more permanent trach collar days and the pacimere valve. The pacimere valve is a small piece that goes over the trach. This is what we want. This is make Sophia extremely portable (still with caution) but with far less tubes and wires. This also means is Sophia is able to make sound this is a time we could possibly be hearing them. To hear my baby cry for the first time or make any sounds really is something I can only imagine. I just cry dreaming for that day. I pray and hope and fill my heart with the possibility of miracles. Pray the same with me. Now, we still have to take this step by step or trial by trial. Pray Sophia's lung keep strengthening and she is able to withstand the trach collar at longer periods of time and can thrive without vent support. Also, we were told Sophia no longer needs the oxygen during the day. So that will help her strengthen her lungs as well. We still have to use CPAP with a small rate at night for her Apnea but the doctor is certain she will grow out of that as well since it wasn't previously there until coming home. So, yesterday was the best appointment so far. We've received great news and have made small steps forward. But FORWARD we march.