Saturday, April 10, 2010


Well it's by far been the hardest week since we got home from the hospital. After getting the ok from our doctor we drove to Arkansas to see our family for Easter. I was so excited because I had not been there in over a year! We followed the same guidelines - no visitors outside family, bathed ourselves in purel and kept Maggie away from any children. But even still, all of us, including Maggie, got sick with colds and coughs. Nothing has been more scarier than when Maggie got her first illness, even though it turned out to be somewhat mild (and thankfully not RSV). Now I now why some nurses in the NICU told me not to take her out for a year. It is just too scary when these little babies get sick and can't breathe. It is even scarier when you are away from home and your trusted doctor.

But after 36 hours of her being sick, we felt she was strong enough to take the four hour drive home and get her to her own doctor. About 5 minutes into the drive, though, Mary Lawrence vomited all over the back seat and herself. My mom and I just wanted to cry. I did! Poor thing had the stomach virus for the next 24 hours but thankfully didn't throw up again until we got back to Dallas.

During the drive Maggie's apnea monitor alarmed twice (meaning she stopped breathing) but we made it home safely and took her to the doctor the next day. I was worried about the cold so was really upset to find that we had much deeper issues going on. As you know, Maggie's feeding issues have been going on about a month now. After trying different reflux medicines, thickening her bottles, every other thing that was suggested, the doctor finally said that he wasn't worried as long as she was gaining weight. Everyone kept saying it was a phase, and after pushing back on that a lot, I finally accepted it. I shouldn't have.

Her weight gain has slowed down significantly so much so that she has hardly gained any over the past two weeks. And she has more and more dry diapers ( which means she is dehydrated). On Friday she only ate about 4 ounces all day. And she should be taking about 16-24. It was really scary.

But the doctor gave us a new game plan and we are trying some different prescription formulas (something having to do with a protein). I am not so sure but we'll see. I kind of feel like if I hadn't listened to the dietitian and doctor, and had just breastfed her like Mary Lawrence without all of this pumping and adding supplement to it, maybe it would have all turned out differently. But I can't second guess I know.

I keep asking why she was such a good eater and then just stopped. I haven't really gotten a clear answer other than as some preemies' brains get more developed they become more discerning and it could be a taste thing, or a reflux thing that is hurting her. Either way, she has decided she does not want to eat. And nothing is more frustrating and scary. There are several things we can keep trying but the last resort is a feeding tube but we are not even thinking about that right now.

Thanks to all of those who have asked and kept up with us about that. I haven't blogged about it because I didn't want to make a big deal out of nothing. And I am tired of always having some crisis! But we would appreciate your prayers as we try to resolve this issue. Many thanks as always...


  1. Gosh Lee, I am so sorry. Hang in there. Keep pushing on! You are being a great mom and I know you have to be totally worn out. I will definitely be praying for you and Maggie's eating issues. I hate that for you. That is the last thing you need to have to worry about right now. I am praying God will give you strength for each step- and not just enough to get by, but a ton- so you have extra patience and lots of joy. I hope you can enjoy this crazy life you are living right now- despite the constant frustrations and things that keep getting in the way.

  2. I am sorry but not suprised to hear about her feeding issues. Unfortunately it is a huge problem with many graduates. They hit a certain biological age and it is no longer "instinct" but becomes a choice and they frequently choose not to eat. Many out grow it eventually, and I wish I could tell you it would be soon but often times it takes a while. Worse case scenario she gets a gtube. I promise it isn't as bad as it sounds and she could still take as much oral feeds as she likes. They have a great feeding program at Our children's house. I know it is normal to second guess your self but you are a great Mom and I wish we could could clone you at work! Keep up your patience, prayers and persistence.