Emma is now 11 months old. She still cannot sit up on her own, cannot crawl, cannot stand up on her own, has been on oxygen 24/7 for over a month, and we still don't know any answers. I know this status may sound the same as when I first started this blog. With that said, she has come a long way since our hospital trip in December, six months ago. She has consistently been on the growth chart for a couple months now. She is much more interested in playing, babbling, will say dada, will (rarely) say mama, and is in general a very happy baby. Others may look at her and see how far behind she is. I look at her and think about how far she has come since December. I use December as a baseline only because that was her first official "hospitalization". I look at her pictures and see a dramatic difference from December to now. I look at her December picture and I first think, how did I let her get to this point? But then I have to change my thinking because I know it wasn't a matter of "letting her" get to this point. It's just, simply put, she wouldn't eat. I have accepted that I couldn't have done anything differently. In regards to her eating aversion, you can make a four year old sit at the table until she eats her carrots; you can't make an infant eat. Even after numerous specialists help, she just wouldn't eat. Now, she has a means of eating. I don't know how many people we've had to tell, "she can eat a full bottle in a reasonable time period, she just doesn't want to".
Over the last few months I have found comfort knowing that, although having a feeding tube isn't typical, she's not alone. I've found a Facebook group focused on people with feeding tubes. I feel like I am now a part of a selective group of people that are focused on sharing questions, frustrations, medical situations, and general topics all related to feeding tubes.
We still don't have any answers for what is going on with Emma. With each test she goes through I hope they will find an answer. It is discomforting to think that you want a test for a rare genetic disease to come back positive, but if we know what condition she has, then we can work to treat (hopefully) whatever it is that she has had. Just yesterday she had a lung biopsy to see if this will give us answers.
The biggest impact to everyday life in recent months has been the fact that Emma is on oxygen 24/7. Wherever we go, we need to bring an oxygen tank and her pulse oximeter. We can now pretty quickly get it hooked up to the stroller. The biggest difficulty is transporting her around the house.
To the left, Emma at 5 months.
To the right, Emma at 11 months.
Oh, Jenny, she looks amazing!!!! just awesome, such a difference 6 months made!! So much more alert and aware, so much bigger, she is doing great!! It is so hard to compare to other kids, where she should be, we have stopped doing that, and just keep up a running tally of new things accomplished for G, that way we see progress for him, alone.
ReplyDeleteFeeding tubes are hard, and can be difficult to work with, but the overall effect is great, and she is growing, so all is good!!!
Never beat yourself up over what you could have done different, if you could have stopped the cycle earlier, you had no way of knowing or changing it. You are doing a great job, and it will only get better as she continues to grow and develop further.
Keep reaching out, keep your chin up, and keep praying, your baby girl is gorgeous, as is her big sister, and her mommy is dedicated, that is all she needs right now!