After you were born so early and we knew you would be hanging out in the hospital for a good chunk of your life, I thought I would miss out on you just "being a baby". You know- small, cuddly, sleepy. It made me a little sad. When we brought you home you were still small, cuddly, and sleepy and I couldn't help but say to myself that I wanted you to be small forever. I have heard lots of moms say that before. I wanted to soak it all in. But sweetheart, when I said I wanted you to stay small forever, I didn't really mean that I wanted you to stop growing.
So much has happened lately and I have done a poor job keep photographic records of it all. So let me catch you up to speed.
Back in early September your doctor was concerned that you were not gaining weight as much as he hoped. After giving you some medicine for acid reflux issues, we gave you a few weeks to kick things into gear. Not a whole lot changed in those few weeks, but there was some good progress in the few days prior to your appointment. The doctor decided to give a few weeks more. Unfortunately, not a whole lot changed by your next appointment. By this point, your doctor and I were very worried. An x-ray was done of your chest and we were sent to the lab to do some blood work. After 2.5 hours, 3 pokes, 3 vomits, and a good deal of crying, we came home and ate, slept, and cried some more. It was a miserable day.
The following day I got word that your blood tests had come back normal (no cystic fibrosis- thank goodness), but that your x-ray wasn't normal. Your cardiologist from Salt Lake had taken a look and wanted you up to Salt Lake that Monday to check things out.
So up to Salt Lake we travelled. Let's just say you are not a fan of car rides. Neither was I. You were taken in for a sedated echo that morning. That meant no eating after 2am and a lovely i.v.. Thankfully the i.v. team was a hundred times better than the phlebotomists in St. George that week before. Still, you were tired, hungry and upset and the screams were a lot for your dad and I to take. On the other hand, all your expended energy made it possible to use a very small amount of sedation meds, so that was good. I can't really describe your disposition. Just "drugged". It made me sad. I didn't enjoy seeing you that way at all. After wheeling you to the recovery area, I got to feed you and love you and snuggle you to my hearts content. We spoke with your cardiologist and pulmonologist (the lung doctor). Ultimately, they decided to put you back on oxygen for another month in hopes that you would work less to breathe and grow better. The cardiologist said this would allow for more shunting of blood through the hole in your heart, but that your heart would heal if you started growing better and healing your lungs in the process. If you don't improve over the next month, they would like to surgically close the hole in your heart. If this is necessary, we are hoping you will be big enough for the catheter surgery (versus a regular "open heart" type of surgery) as it is less invasive and so that you won't have to stay in the hospital for several days recovering.
Oh, Sofi, how my heart aches just thinking about it all. Grow, baby, grow. I am begging you to grow.
We're back at home now- getting reacquainted with your tubes and praying. Lots of praying. It is funny how quickly we got used to living sans tubes. All your rolling and moving around has presented lots of new challenges with your tubes. Though it's quite funny how much you seem to like having them around. Except the whole actually keeping them in your nose. And putting them on your face with Tegaderm. And taking the Tegaderm off your face. But the playing with them- that you seem to love.
Sofi, Sofi. Always so much going on. Now you get a helmet tomorrow.
I can't believe your first birthday draws so very near. I am reminded how lucky we are to have you around. We love you more than you'll ever know.
