Wednesday, April 11, 2012

Long Overdue Update

If anyone still follows this blog, my apologies for being so lazy about updating! Its been more than 3 months since my last post.

Our little girl is doing much better now (thank God). She is now 5 months plus. She is pure joy, and I love every second of my time with her. After all that she went through, I appreciate every moment spent with her more than ever - always with the knowledge that this may not have been. She still has residual problems of having been on the heart-lung bypass machine and the ventilator. A major problem is that she has feeding issues due to paralysis of one of her vocal cords (a result of either the surgery for being on the machine, or the ventilator). As a result of the vocal cord paralysis, she runs a risk of aspirating fluids. A swallow study was done when she was in the hospital, that showed that even though she aspirated fluids of regular consistency, she could drink milk thickened with a thickening gel.

When baby girl first came back from the hospital, she had a naso-gastric (NG) tube (a tube that goes through the nose into the stomach). This was because her milk was so thick, that she had a hard time taking the entire feed directly through bottle. Imagine sucking milk shake through a slow flow nipple. She would drink 20 - 30 ml, then fall asleep. So we had to use the NG tube to supplement the milk she couldn't take by bottle. The one thing we had to do before we left the hospital, was practicing how to insert the tube, since in case she pulled out the tube at home, we had to learn to put it back. I remember doing it for the first time, and crying so hard afterward. It was just awful, having to stick a tube into the nose of your crying sputtering baby. The nurses were amazing, and reassured me that it was all for the best.

When we first came home, we also had to connect baby girl to an breathing and heart beat monitor, since the NG tube posed risk of fluid getting into the lungs if it was displaced for some reason. That was hard too - if we moved from one room to another, we would have to lug the monitor along. Just as baby girl would asleep, the stupid monitor would shriek, because the leads attached to her body would fall off  - waking the poor child up. Let's just say, the first two-three weeks back from the hospital were hard. Of course, we were just glad to have her home with us, so it didn't seem to matter as much. Fortunately, she learnt to take her entire feed by bottle within two weeks, and we took out her tube the day before X'mas!!

There is so much I want to write, I guess I am rambling!! Maybe, I'll manage to find time more often to post (maybe). Since I pump, I feel like I am stuck to the pump every time baby girl takes a nap. I usually browse with one hand while I pump, but typing is just difficult - which is why I haven't had a chance to post sooner.

I hope our troubles are in the past. I hope baby girl continues to do as well as she is doing now. She is such a brave girl, and I am so proud of her. Just today, she dragged herself (commando style?) quite some distance on her tummy! She is starting to get quite mobile now, and watching her reach her milestones makes me so proud (and thankful, because we have to make sure she is not behind on her milestones, since the lack of oxygen during her initial few hours may have affected her brain).

I think I should wrap up now! Thanks to all the readers who managed to read the entire post!