Hidden Blessings

Madalyn made a new friend in school named McKenna. Her mother and I visited on the phone for quite some time and discovered that we have some things in common. She is an RN and works in the NICU (Newborn Intensive Care Unit) at St. Francis and is very familiar with the things Claira is going through ... she also recently went through feeding struggles with her last child, Hunter. Hunter was born with malrotation and required immediate surgery when he was diagnosed. After many months of struggling with her son she was able to get him to eat again because of her experiences as a nurse. She has been very successful at getting "hard to feed" babies to eat.
Not only was she helpful in answering questions about Claira's NG tube, etc. she's agreed to help me work with Claira after her surgery. I'm so grateful for this new connection! There's still a chance that we'll be unsuccessful. She may still require the G-tube in order to feed her milk, but she will be able to eat solids and eventually will eat normally.

The drama continues

Yesterday Claira threw up twice and both times it had blood in it. The pediatrician felt it was irritation from the feeding tube. He said it really needs to come out but we also really need it in! He said we have a big week ahead of us and that we should just "hang in there". She pulled the tube out again last night, but not all the way. So we were paranoid that she had aspirated some of the milk as well. The nurse told me what to watch for and we got a pulse/ox monitor from the Knifechiefs. I think initially I was naive in thinking that we had dates ahead of us and it would be smooth sailing from here. Oh well ... we both know this is not going to last forever. This girl is such a fighter! Maybe we should start praying for her teen years!
PTO is providing meals every Tuesday and Thursday for the rest of the month and we recently found out that someone has been randomly depositing money into our utility account. So, we probably won't get an electric/water/sewer bill for the next few months! Various donations have been left at the school for our family. Sorority came and cleaned/sterilized my house last week and left a pot of soup, fresh fruit and fresh flowers on the table. And church is always just a phone call away. I'm blown away ... I never imagined so many people would reach out to our family. I'm so grateful we've made such good friends and to live in a community of such generous people.

Still gaining

Claira gained another 8 ounces this week! I'd almost wonder if we were giving her to much, but I don't think that's possible at this point with this baby. I drilled her pediatrician today about her loss of interest in taking a bottle. I told him I felt like I was cheating and that it goes against everything I know as a mother. He said that we sort of are cheating but we have to with Claira because she won't do enough on our own. He suggested that we get the information on the heart cathyter next week and then decide what to do. This morning I tried giving her a bottle and she started choking, almost as if it was a new sensation to her. The pediatrician said he'd almost rather I didn't try for now to ensure she doesn't aspirate and aggravate the situation.
Her lungs sounded crackly today and with a normal baby that would be a scary sign ... possibly even hospitalization but again, she's just trying to get over pneumonia. I don't think I've ever heard of someone taking this long ... almost 5 weeks!

Things are looking up

I think things are getting as close to normal as they can be for now. We're still doing breathing treatments every few hours and suctioning as often as possible to help her eliminate the junk that's in her lungs. It's hard to completely let down our guard with the upcoming surgery hanging over our heads. We have to get her healthy again and keep her that way so we won't have to postpone. I always thought that hearing the doctors admit that her heart was causing the feeding problems would make me feel better, but it really hasn't. I still worry and obsess over everything. The pediatrician says I shouldn't worry about the fact that she won't eat, but I do. My natural instincts as a mother say that I should be feeding her something ... constantly ... even though she's getting continuous feeds through the tube. It simply goes everything I know.
She keeps on smiling, though. With all that she's going through she continues to be curious and demand attention when she thinks she's getting left out of the fun! Babies are amazing creatures!

Close call

Yesterday Claira, Kaylee and I were feeling under the weather. I woke up with a serious stomach virus, Kaylee came home from school feeling the same and Claira woke up looking pale and a bit on the cranky side. I've come to learn that when Claira gets pale, it means she wants attention! At 1:00 pm she pulled out her NG tube. This was the first time she's ever pulled it out while the feeds were running, so I got concerned about the possibility of it getting into her lungs. I didn't hear back from the doctor's office until 6:00 pm and by then it had been 5 hours since she'd eaten and when the doctor's office called they asked that we take her immediately into the after-hours clinic at St. Francis Hospital. Since I was sick, Tom had the honors. So he came home to a disastrous house and had to turn around again to the hospital.
After a few hours he called to tell me that they were preparing to keep her over night for observation because of how badly her chest x-ray looked! Fortunately, the attending doctor on call was Dr. Barton (one of the docs who treated her during her hospital stay). He compared the x-ray to one they took just before she was discharged and decided that it wasn't worse or better than before. He said he didn't want to put us through that again. He sent them home and prescribed a double dose of lasiks. The nurse put the NG tube back in and by 11:00 pm she had food in her tummy again. The frustrating part is that after 10 hours of nothing in her tummy she never would take a bottle! It's been three weeks since we've been able to feed her more than 1/2 an ounce by mouth.
Today the pediatrician had us start the Xopenex treatments again to help her get the crud moving in her lungs. Thankfully (after complaining about how much I hate the bulb syringe) he had home health bring an aspirator and a B.B.G. (that's short for Baby Booger Grabber). It's a vacuum to suck out her little nose. That's probably why she was looking so pale yesterday, the poor little bug couldn't breathe! As far as the eating problems ... we're not going to push it right now ... we'll just deal with one thing at a time!

Oh ... one more thing

Chelsea had an asthma attack today. The school nurse said her lungs sounded bad and that we should rule out pneumonia, so we spent 7 hours in the Claremore ER. Fortunately there's no sign of pneumonia ... just a bad ear infection and asthma troubles. So she and Claira have breathing treatments every 6 hours using the nebulizer. Why not? We didn't have enough to do anyway!?!?!

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