Tag Archives: Dani

Chloe is Home :)

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Chloe at 2 months old.

 

Finally! After 2 months of NICU, Chloe Luna Aurora Lowe is home. Well, actually, she’s at Mama’s for a couple of weeks so the new parents can have some help, which they may very likely need.

She is gaining weight. Right now, she’s tipping out at 13 lbs, BUT she must be fed through a tube directly into her stomach because her epiglottis isn’t functioning properly and she is in great danger of aspirating her food into her  lungs if she tries to nurse conventionally. Several hours a day, Danielle hooks her up to what looks to me like a big IV with a bag of cereal and rice in place of glucose or meds.

She has to be tube feed, at least at the moment because, for reasons no one, including the doctors and specialists, can fully explain Chloe vomits during and after every meal. Now when I say vomit, I mean VOMIT, not any little “spit up”; she projectile vomits like a sorority girl on Friday night during Rush Week. It is very painful to watch because it makes us feel so helpless. Hopefully, this will improve as she gets older, but no one can really say at this point.

One other problem she is coping with is a currently useless left arm. During her delivery, the doctor at Laurens County Hospital twisted her arm nearly all the way around in his hurry to get her out of the birth canal and get the cord from around her neck. While I understand his reasons, I think the whole awful situation could have been easily avoided. Travis overheard two doctors discussing Chloe in NICU at Greenville Memorial Hospital and both agreed that nothing short of sheer negligence on the part of the delivery team could have been responsible for many of her injuries.

Just as a warning to you all, if you are ever in Laurens County, SC and you are injured or sick, hold it off and make the ambulance driver take you to Mary Black in Spartanburg, Memorial in Greenville, St. Francis in Greenville, or Self Regional in Greenwood. I’ve lived in Laurens County nearly all my life and that place has the WORST reputation and record of any hospital I’ve ever heard of. Sixty two years ago, a doctor in the delivery room killed my baby aunt by crushing her head with forceps during Granny Wham’s delivery. They haven’t gotten much better in the intervening years. Suffice it to say that if Budge were with child and in hard labor, I would take her to my veterinarian for the delivery before I’d take her to Laurens County Hospital and that is NO JOKE. Dr. Melanie would stand a much better chance of delivering her child successfully than any of the two-bit butchers at LCHS. Just remember, the bottom 1% of the graduating class in med school still get called “Doctor.”

On a positive note, though, Chloe is hitting all her cognitive benchmarks for her age and weight. She tracks and recognizes different people very well. She is a wonderful baby and seldom cries except when she is having the site of her feeding tube cleaned. That procedure involves washing and anointing some very tender and chapped skin around her navel with an alcohol based cleaner. It is apparently very painful.

So, thank you to everyone who has asked about her and kept her in your hearts and prayers. You are greatly appreciated!

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Chloe at 1 Month

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Okay, I’ve gotten a few emails about Chloe’s condition and, since she just turned one month old, I thought I’d bring everyone who drops by up to speed on my newest niece.

She is still in NICU. Even though you can’t tell it by looking at her, she’s had a huge amount of trouble keeping any food on her stomach almost from birth. The doctors tried two types of meds that didn’t work and so, as somewhat of a last ditch effort, Chloe spent last Friday turning a month old and being operated on.

The hospital flew in a neonatal anesthesiologist specialist to handle putting her under and that relieve Mama to no end. I guess we were all worried that if she went under, she might not come back. This man is supposedly the best in the southeast, though and she came through the operation with flying colors. She now has a button in her bellybutton that attaches to a device underneath her stomach. If you are confused by that, please stand in line behind me and the rest of the family.

Apparently, this mechanism is designed to manipulate her stomach or close off her esophagus or something along those lines to stop the acid in her stomach from flowing back into her esophagus, burning her throat, and causing her to throw up. The tube-like device must be changed every 90 days.

That is what I know and to be honest, I don’t really have any idea what this “device” is because I’ve never heard of such. It doesn’t help that I get my information third hand and haven’t actually spoken to a doctor. If anyone reads this and knows something about this procedure, PLEASE leave a comment or email me. It would make Mama very happy!

Thanks for all your concern and keep those feet clean!

Latest News on Chloe

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Chloe Aurora Lowe, age 2 days

 

I appreciate everyone who has been checking with me on Chloe’s condition.

Travis is terrible at keeping us informed, but I can hardly blame him. He’s trying to work three part time jobs, look after Danielle, and be strong for Chloe all at the same time so it’s little wonder he doesn’t have much time for phone calls.

He did call Mama yesterday, though and this is what we know to this point. Chloe is still in NICU. Danielle was able to nurse her for the first time on Thursday, but she and Travis are still the only non-medical people allowed to touch Chloe.

Doctors now estimate she’ll be in NICU for at least another month. She isn’t eating well. She spits up a lot of whatever she eats and she doesn’t show much enthusiasm or appetite when it comes to food. According to the doctor, this is because her body is devoting so much energy to repairing the damage from her birth that she has nothing left in the tank when feeding time comes.

Okay, I didn’t go to medical school because I don’t deal well with blood, but it seems to me a baby’s body and instinct would be intelligent enough to know that food is critical to the repair efforts. Whether or not this latest development is a result of her oxygen deprivation or not, I don’t know. Luckily for her, her hefty birth weight (9.5 lbs ish) is keeping her going. She can afford to lose ounces where a smaller infant would be in immediate danger.

That’s pretty much where we stand at the moment. Travis and Danielle are moving into the Greenville Ronald McDonald House either today or tomorrow and that will help cut down on gas and travel and general wear and tear on their one car AND their bodies. I’m sure at least some of you out there know how much sitting in a waiting room or crouching by an unringing phone can wear on nerves, soul, and body after a while.

Again, thanks to all who have been asking about her and just keep her in your thoughts. I’ll post more when I know more.

Love y’all.

Update on Chloe

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Chloe Aurora Lowe, age 2 days

 

If you are ever having a really bad day and you want some cheering up, do not go to a pediatric intensive care doctor. Those people make me look positively googly-eyed optimistic by comparison. I always though oncologists were bad to paint an exceptionally bleak picture, but Chloe’s doctors make the most dire predictions of a cancer specialist seem cheerfully hopeful.

Don’t get me wrong; I understand their reasons. Hope is all fine and good, but it is also paralyzing and dangerous as well. When the doctors prepare us for the absolute worst, it makes anything above that seem like gravy. False hope doesn’t help anyone and I’ve actually seen it make matters worse.

Thankfully, though, we are dealing with real hope based on scientific test results now.Since Monday, Chloe has had an overnight brain wave test, a CAT scan, and an indepth MRI performed on her little brain. So far, every single test has come back completely normal. As of this moment, her brain shows no sign of tissue damage and her neurons and synapses seem to be firing just as they are supposed to. While the family and I see this as a tremendously positive sign, the doctors are warning everyone against overly optimistic predictions. Apparently, she is not out of the woods yet, but she’s moved considerably closer to the edge of the trees.

Danielle and Travis have been allowed to hold her and Danielle has bottle fed her. It even looks as if she may get to come home far ahead of earlier predictions of two months. She will have another MRI early next week to make certain nothing was missed in the first test, and then, once she shows she can eat four straight meals out of a bottle on her own, she’ll be headed to the house. Considering this time last week we hardly expected her to make it through the night, I’m taking this as a positive sign.

The doctors have warned us, as they are wont to do, that damage may still show up later on as she begins to use more of her brain for other tasks like speaking and walking. She will have to have a monthly MRI for the next two years or until she shows signs of an issue — whichever comes first. Still, even though we are taking the warning to heart, the family is very happy at this turn of events.

I don’t know what to call it. She was definitely not breathing for a documented five minutes. By all rights, something should show up damaged. Miracle? I’m not discounting the possibility. Lots of people today don’t believe in miracles anymore. Diehard atheists like the Richard Dawkins-es of the world discount everything they cannot see, touch, or at least measure. I admit that I no longer boast the blind, childlike faith of my youth, but then I don’t think God expects that of us. This is a real world with real issues. What I do know is this, my niece was born blue and not breathing and a week later she’s growing and responding normally. Medical folks might point to the fact that she was a hefty 9.5 pounds at birth and so had more blood with more oxygen in it to carry her little brain through those few critical minutes.

I don’t know. If I knew, I’d go to Vegas and get rich as a gambler. As it is, I’ll just be glad to see little Chloe leave the hospital.

Love y’all and keep those feet clean.