We've been slacking on the photo updates I"m told so thought I would indulge you with a couple of the cutest boys and give you an update while we are at it. Things have been busy so you may want to grab a cup of coffee or even a snack while catching up...:)
Its been a challenging week, nothing terrible but I did completely underestimate the impact of having a baby home requiring oxygen. At the time of planning Alex's discharge last week, all I could think of obviously was getting him out of the hospital and having our family back together. How hard could it be to manage oxygen? In reality I guess the logistics are not really that hard, we just have to be conscious of where all the cords and tubes are whenever we pick him up or provide care, keep an eye to make sure that he doesn't take them out of his nose (he's gotten VERY good at figuring out when doing tummy time, he just has to rub his nose on the blanket and waalaa....no more tubes), very smart boy!
More of the challenge I think is the emotional piece. The alarm sounds and your body goes back into fight or flight. The major difference is you know you are here alone with both your babies, and don't have the "back up" of the hospital staff or anyone actually if there really does become a problem and that just downright has made me come unglued a couple times already.
For the most part, this is all manageable, although obviously not ideal. You feel always just a little more on edge, and this on top of not really understanding for sure what caused this or if/when he'll no longer need it. Yesterday I had quite a scare when the alarm sounded and as I watched the monitor, the numbers kept dropping. Immediately like always I look to see if the prongs are in his nose but surprisingly this time they actually were so thats when the true panic set in. Ofcourse at this exact moment with the alarms sounding both outside and inside my head, Nicholas also started to scream, making it quite impossible for me to stay calm. When the numbers started to fall towards an oxygen reading of 50, I thought NO WAY. (Ideally your oxygen rating should be close to 100 but anything above 92 would be acceptable). I remember what 50 looks like from our old hospital days and I thought to myself he does not look 50, but ofcourse there is always a part of you that is more likely to keep second guessing yourself rather than a monitor. I then checked the sensor on his foot and it had come loose so okay deep, deep breaths and crisis averted. But it sure left me with a very helpless feeling.
We go back to Pulmonary clinic tomorrow morning so we'll see what they say. I have to say we are still concerned about whether the shunt is contributing to this situation, especially due to the relatively new feeding issues as well but there are no other symptoms at this point and is "soft" spot is still soft which apparently is one of the first places we would see a difference if it was a shunt issue. I'm just not convinced. After tomorrows appointment, we may be pushing for another appt. with neuro to discuss.
In the good news department, the boys are starting to change before our eyes. Alex is just beginning to be more vocal which we love because we were starting to worry about the lack thereof. He is doing more grunting, crying, and in general expressing himself. He is also holding eye contact a lot longer which just melts your heart when all of a sudden you realize he's just staring at you. Both boys are exploring their environment a little more, they are finding their hands and just starting to grab at things, your clothes, my hair, hmmm...I feel the ponytail stage starting for me, ha,ha
Nicholas is getting even more vocal (if thats possible). He likes to talk to us throughout the day and it actually doesn't sound like all complaints so we are enjoying the new "music". The most precious thing ofcourse is that it seems that their smiles are just starting to emerge. It may still be "gas" smiles but we don't think they all are these days. Either way we are not terribly concerned with the cause, just enjoying the result!!!
Oh and weights: Surprisingly with all the encouraging that we've had to do with Alex and getting him to eat, he is still gaining very well. I was shocked when they weighed him in at nine pounds, 1 ounce yesterday!!!! Nicholas is also doing incredible. He is up to eight pounds, nine ounces. We couldn't be more thrilled! Tomorrow they are officially FIVE months (two months adjusted age). Just can't believe it.
On a side note, I actually got out of the house earlier this week and connected with other local moms who have children with medical and other special needs. Its a great program I just happened to find on line called "parent to parent". Its an organization that helps bring local parents together facing similar issues for information sharing, and support. I've only been to one outing so far but it was soooo validating to talk with other moms raising children while trying to navigate a myriad of health or developmental issues. We were able to "vent", discuss local doctors (the good, the not so good), medications and treatments, give eachother tips and support. Our children all have different needs but we had much more in common than differences. They are a fantastic and inspiring group of moms and their trials and stories really put things more in perspective for me! I feel very blessed to have met this group of ladies and I am already looking forward to next months get together. Its another reminder to me that God works in wondrous ways!!!
Oh and I could NOT have gotten through this last week (and many other weeks) without the emotional and hands on support of my Mom, my Aunt Kim, my hubby ofcourse and dear friend Vickie. Thank you for being exactly what and where I need, when I don't even know what that is half the time!!!!! All my love and gratitude!!!
Nicholas posing for the camera