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!


  1. It's great to hear from you and how wonderful your FIVE month old daughter is doing!! Crazy how time flies isn't it? Those first few weeks do sound incredibly tough, but you are one tough cookie and only you could do as great a job being her mom. I sure hope to hear more from you soon! :)

  2. I am so glad for the update! Glad things are going well, I can't believe she's already 5 months old! Wow!

  3. So glad to hear that baby girl is doing well!! What a relief for all.

  4. So great to hear from you. I cannot imagine all that you have been through in these early months. I hope that baby girl continues to heal more and more. It is beautiful to hear your mothers love coming through as you talk about your baby girl.

  5. So glad you gave us all an update, we are all still here for support for you. You are so strong and im sure your little miracle loves you eternally for it xxx

  6. Ooooh Keya - I'm so happy to hear about your baby girl dragging herself commando style along the floor. It brings a silly tear to my eye : ) Your first few weeks home with her sound VERY hard. It is hard enough having a newborn - I really can't imagine the NG tube and monitor on top of it. Oh hon - I wish I could give you all a big hug. You've really made it through some tough times. I'm so happy you have your baby girl in your arms now.

  7. Yay an update! I'm so, so happy she's doing well. She sounds amazing, and not behind at all. Floyd did an inch maybe once with a one-armed army crawl.

    Man, I have so much respect for what you went through. Floyd had an NG tube in the hospital. Her roommate pulled his out and they had to replace it (they were both too weak the first time to cry); his screams ripped my insides apart. Floyd got hers replaced then too and I wanted to cry with her. I just don't know I could've replace it myself. And the monitors...oh my god those monitors! As soon as she was strong enough to kick again, that stupid pulse ox went off every 20 seconds. All I wanted to do was hold my baby without dragging cords around with her and setting off alarms.

    I can't imagine going through all that at home without the hospital support. You're amazing!

    p.s. I still marvel at how many similarities we share. It's crazy.

  8. Thanks for the update. It sounds like your baby girl is getting stronger every day. I am glad that she is now home with you.