Cardiologist and Feeding Tube

14 Weeks 3 Days

1 day old

14 Weeks old

Look how small that hat is on her now!

So, I have not posted in awhile. I have been busy feeding her. It is almost all I do unless I can get someone to help and even then she has been less interested in taking a bottle from others than she is from me... it is mind numbing and exhausting, but worth it!

At her last cardiologist appointment they threw around the "F" word.... aka feeding tube... They said she was not gaining enough. She was gaining about 3/4 of an oz per day and they wanted her to gain an ounce per day. I went into hyper feeding mode and for the first couple of weeks she gained more than an ounce a day, until she hit 8lb and then she just stopped. I wondered if she just forgot why she eats because she had a bottle in her face all the time. I tried following her cues again. I begged on facebook for volunteers (thank you so much to those that responded) to feed her in the mornings so I could give my son the attention he was desperate for. I set alarms so I could feed her in the middle of the night and my husband got up early so he could feed her before work. I spend an entire therapy session with the OT talking about feeding issues. She STILL was not gaining an ounce per day. I decided to quit my job and not go back to work so that I could care for her full time for the foreseeable future. 

It bothered me because she is in all other ways acting very healthy. She is awake for most of the day 8am-midnight. She is chubby, she is very active and alert. It was not that she was too tired or lethargic to eat either. She is just FULL. She would pull the bottle out of her mouth with her hands, bite the nipple or suck milk in to spit it in your face. She was actively fighting being fed. 

So... today I dressed her in the heaviest outfit that I thought I could get away with and I braced myself for a fight against the tube. When we got there they said that they were not concerned. She was barely below what they want her to gain and she was in the 50th percentile (adjusted for DS and prematurity) for both weight and height. 

The good news didn't stop there though! Her VSD is almost closed and her PDA may close also. She still has an ASD that will need to be operated on, but she is doing so well that they may wait until she is past 6 months old to do it. 

Prayers are working! Please keep them coming!