We've been waiting and waiting and waiting and waiting for a coming home day. Through many different issues, Ilse has continued to do well. Now, finally the doctor has come down with, if she's showing that she's gaining weight, she can come home. She lost 2 ounces after her G-Tube surgery, and in addition it has made her spitting up worse, sometimes to the tune of 35 mls, which (at the time) was half her milk. Now, though, I suggested to the doctor lowering the amount of food she gets to 60 ml, and adding calories to it. Hopefully she will do better on that amount of liquid in her little tummy. The balloon that holds her Mic-KEY button in place does take up some space in her tiny tummy, and Tim and I don't see the reason for making her gorge 70ml just to barf it up because that much food simply doesn't fit in there right now. The doctor said her stomach could stretch to hold it, but why on earth would we want to force it to stretch? The nurse says, just push it in with the syringe, but hello, if somebody forced you to eat more than you could possibly hold, wouldn't you spit it up, too?!? Poor child.
Anyway, if Ilse can show she can gain weight, then we can go home as soon as all her pump supplies arrive at the hospital and we learn to use it and she passes her car seat study. We are seriously hoping the hospital doesn't try to make us do the 'rooming in' to prove we can take care of a baby at night. Good grief.... the other night I tried to stay up there all night and they didn't want me to. I don't know why they sometimes want me to take care of her, but then other times they want me out of the way. I feel like I've already proved I can take care of a baby with issues even though I'm truly exhausted with driving three hours a day, staying up at the hospital till all hours of the night (no kidding), and trying (and failing) to take care of the house, too. Praise the Lord for a husband who can do dishes and vacuum floors, not to mention completely taking care of the boys when I am not here. He's really good at fetching me tylenol, too, for my headaches.... which are no doubt stress related since my blood pressure at last check was 112 over 76. All that to say, I can only believe it will be easier to take care of her here in our own home when I am not spending so much time on the road and sitting in a not so comfy chair at the NICU. I know the boys desperately want their sister (and mommy) home. Today Bam-Bam cried truly sad tears because he wasn't going to get to see her when we all went to the hospital. I'm so sad for them. I think they think I made their sister up.
I did get to give Ilse a bath, and I know exactly how to work her button. However....... they do not like that I want to follow the instructions and clean it out properly. As a result, it has already started to leak. We'll see if it can be resolved.
Ilse Joy has become much more alert now that she is awake more often. She looks at me with her sweet little blue eyes, and I know she knows exactly who I am. She loves laying on my chest as she eats and sleeps, and it is such a special time. Even though I resisted the notion first of getting a pump for her eating (I think the expense of it played into that), I now think it will be much better because NOW I don't have to use a hand to hold a syringe up in the air. I can use both hands to hold her and work on her burping or oral stimulation.... which she loves. She has really come to love having a pacifier or, more preferably, my finger in her mouth. Mostly she just bites it (owie kazowie) but sometimes she sucks it.
I really want her home so I can rock her in her own chair and lay her down in her very own bed in her very own pretty room. She is so precious and a true blessing from our loving Father.