Dear Caysen,
What a month we have had! We spent the first four days of this month finishing up our inpatient hospitalization in Ohio. We discharged on the last day of the month of March and welcomed April in happily with nice warm naps and sleep in our own beds. It was fantastic!
Since we have returned from surgery we are in awe at you and how much better you seem to be feeling. You are digesting you foods at a rate of 135ml an hour. You sleep better, still not perfect but better, for sure. When you wake up now it's for turning or because you lost your paci. At least it's not to wake up to vomit because there was too much gas in your belly! We have followed up with your many an specialists as it has kept us on our toes - thats for sure! In other news our cardiologist is thrilled with your progress. We are working on getting your healthy and bigger and getting you used to your new blood flow. Many of our specialist visits won't be for a few more months, we are finally starting to space things out.
You weigh in at 16 pounds, 9 ounces and are 27ish inches tall. You are wearing size three diaper, it seems as if we just skipped right on through the size twos. You are wearing 6-9 month clothes, you still have a fairly small waist. You are still getting 5 bolus feeds a day of 140mL, but at the 5 o'clock feed we let you play with food and work on feeding before starting your feed. You are doing better at putting new foods in your mouth and trying them, hopefully soon we will have you snacking away!
You are developing well, we are continuing with our Soonercare and are getting stronger! We are putting you through your paces daily. Diaper changes we work on rolling. We practice sitting ourself up using our hands and reaching. We are working on tummy time over the boppy or with rolls and trying to show you that you can get yourself out of that predicament. We work on putting you on your hands and knees to get stronger, and even bearing weight through your feet and trying to get used to standing. We work on talking/babbling and even wanting to play in food or bring it to your face. Little by little we see improvements every day! We can't wait until you are eating better by mouth, it's so hard to be patient because it is such slow process so far. Praying for improvement in this area!
Our big development this month was failing a hearing test that was given by Soonercare. They come out to the house to follow up on hearing and reassess, and they tried for two different months to get accurate testing on your left ear. There was fluid on your left ear for quite some time. Finally the fluid was gone, but your test showed that you failed 3 out of 4 frequencies. We have our appointment tomorrow to be further evaluated.
This month you had your first Easter! Your first official family gathering. We have taken you on lots of walks, gotten you outside and in some fresh air. You are loving your new found freedom, and I can only hope that we can continue to give you more freedom and yet keep you well!
You have developed a severe attachment to me, and Daddy as well. If I turn my back on you and move around in the SAME room as you, you begin to cry. Leaving the room? Out of the question. I know this is a normal thing, but I can't help but think it's made a bit more severe after all you have been through!
We are so busy and so blessed by you. I had a surreal moment earlier at my in laws house. I was the only one inside, everyone else was on the back porch, sitting in the porch gliders and playing and I happened to glance out through the blinds and the sight took my breath away. I couldn't help but remember back to last summer when I was sitting in those same gliders after taking my once weekly hospital break to spend time with your big brother. You were still in the hospital after your first open heart surgery, still with lots of complications. I remember wondering if you were going to make it to enjoy a summer with us, and what it would be like. So when I saw that sight tonight, I had to stop and thank God and count my blessings. How lucky I am to be your mother, and for you to be here with us each day! God has really walked us through and I love the little reminders like that of just how far we have come!
Love you to the moon and back!
Mommy
