Miss Darcie with her new feeding tube
It has been too long since I updated but things got a little crazy for a while. I try really hard to think positive and not worry too much about my sweet little hunny biscuit. It is hard sometimes. It is hard when your baby is sick and you can't fix it. Around the first of May Darcie stopped rolling over and seemed to have trouble holding her head up as much. We were really worried about her. She was lethargic and just wanted to sleep all the time. She was floppy and had no energy. We were really struggling to help her gain weight. We added extra calories but she was still vomiting and losing ounces. We took her for her cardiology appointment on June 1st and she had not gained any weight since the last visit so they decided to admit her.
She had a NG tube put in and we started feeding her through the tube. 55 ML over an hour every three hours around the clock along with some medication adjustments and she finally started to gain some weight. The doctor watched her drink a bottle and found that she was getting exhausted. She was expending more energy and calories to eat than she could take in by eating. The tube allows us to feed her more and she doesn't have to work to get it so she can save her energy for growing.
They also discovered another hole in her heart bringing the total to three. The combined size of the holes is almost a centimeter. That is why she is having to fight so hard. She has a large inlet Ventral Septal Defect between the valves. An Atrial Septal Defect, a hole between the upper chambers of her heart. And a muscular Ventral Septal Defect, a hole between the lower chambers of her heart.
We got to go home from the hospital June 5th. We take care of all of her feeding and medication through her tube. If she pulls the tube out we have to put it back in. This is traumatic for Darcie and everyone around at the time. She screams and we have to hold her down. We check for placement by listening to her stomach for the bubbles when we inject air through her tube. We are all exhausted but she is gaining weight. She feels better, she looks better and she is more active. As of today she weighs 6 pounds 13 ounces at four months old. Still tiny but she has gained over a pound since being admitted. She had only gained 4 ounces since birth before her hospital stay.
She is such a strong little lady. It hurts my heart to watch her struggle and hurt. She is doing amazing now and getting stronger every day. She will be going to Dallas to have her heart surgery soon. Some days I think I wish we could hurry and do the surgery now. I want to get it finished so she can start getting healthy. Other days I think I am not ready for this at all. I need more time. Handing my baby over to be taken to surgery will be the hardest thing I have ever done. I don't want to let her go. But if she can be strong enough and brave enough to go through everything she has been through I will just have to be strong and brave too, for her. She never gives up and just keeps swimming.
Miss Darcie has her own facebook page now: https://www.facebook.com/DarcieODaniel
Darcie spent father's day in the ER with her daddy. She pulled her tube out and we didn't have one at home to replace it.
