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12/21/2004
OH, MY GOD, et cetera
Paul is so much more low-key than I am. I would have begun his post with, "OH, MY GOD, OUR BABY ALMOST DIED."
Instead I'll begin my post that way. OH, MY GOD, OUR BABY ALMOST DIED.
Yesterday we were awakened early by the ringing phone. It was a physicians' assistant from the NICU, and the call began innocuously. "I just wanted to warn you that we've put Charlie back on CPAP so that you're not alarmed when you come in." But the news got worse from there: they suspected Charlie had an infection.
The overnight team had noticed Charlie was having more desats, periods in which his blood oxygen saturation dipped. His color wasn't good, and he was less active than usual, meaning he didn't squirm or scream when his diaper was changed. They'd taken some blood for a culture and started a course of antibiotics. They'd stopped his feeding until his condition improved.
The doctor called a bit later to repeat what the PA had told us. He planned to remove Charlie's central line, an intravenous catheter placed in a large vein in his arm. Its advantage is that you can leave it in place for a long time, like when a baby is expected to need IV nourishment and medication for a while. Its disadvantage is that it can provide a convenient route for infection to set in. Charlie's line had been placed a few days after he was born. After three weeks, it seemed its sterility had been compromised.
We went to the hospital and sat by Charlie while the antibiotic dripped into his vein. Once again it was hard to see his face between the CPAP tubing and the hat that held it in place. He'd been undressed so that the nurses could keep a closer eye on his color and his breathing. He was splayed on his back, not in the compact midline position he seems to find most comfortable. Except for a slight difference in size, he looked just like he had on the night he was born. Noticing that, I got scared.
We watched as the central line was removed. The catheter was about the diameter of a single piece of thin spaghetti, and it had been threaded deeply into Charlie's tiny arm. The PA pulled it gently and smoothly. It kept coming and coming. And then it was out, and the opening was cleaned and dressed. Charlie's arm was now free of the splint that had protected the line — the first time we'd seen his left forearm in weeks.
He didn't move much as we watched him. His CPAP apparatus bubbled. A blood transfusion was ordered. He slept. I cried.
Around 2, Paul and I left the hospital for a break. On our way out, we ran into the doctor who'd called us earlier. All I remember about what he said was this: "This is really tough...but he'll go home with you." And that was the first time the seriousness of the situation sank in. It finally occurred to me: Wait, you mean there's a chance he won't?
Yes. But instead of drafting chapter 1 in OH, MY GOD, OUR BABY ALMOST DIED for Dummies, I will simply revise and reiterate yesterday's vow: I will not Google "bacteremia preterm neonate." I will not Google "bacteremia preterm neonate." And don't you do it, either.
When we got back to the hospital later, we were told he was doing better. He was having his vital signs taken again, the blood pressure cuff fastened around his upper arm, the little Brookstone vibrator moved around his chest to loosen any mucus in his lungs. And he was angry. He screamed and screamed, more vigorously than I'd ever heard. I was initially pleased, thinking this meant he was feeling well, mustering enough energy to yell.
And then he simply stopped breathing. After a moment of yelling, he'd be so worked up he didn't draw a breath. The nurse rubbed his feet and he started again. Then he'd yell. Then he'd stop breathing. She'd rub, he'd breathe. Spells of apnea aren't unusual in premature babies; in fact, they're often normal, since the parts of the brain that regulate breathing can still be immature. But when the apnea sets in only after a baby has gotten sick, it's troubling. And when it's not a single isolated event every few hours but a string of apneas one right after another, it's especially troubling.
The nurse went to call the doctor. Paul and I watched Charlie's chest rise and fall. When it didn't, we rubbed his feet, wiggled his fingers, tickled the soft skin on his belly — all the things you don't normally do to a premature baby for fear of overstimulating him.
We stimulated the hell out of that baby. We rubbed, he gasped. I cried and swabbed my nose with rough hospital paper towels, then raced over to scrub my hands before touching him again.
After a couple of hours, with a course of caffeine percolating into his new IV, he started to breathe more reliably. It was a good time to do the spinal tap the doctor had ordered to rule out meningitis. Paul and I waited outside while it was done, then anxiously sprinted back to Charlie's isolette to make sure he was still breathing.
Not only was he breathing, he was sleeping comfortably, lying on the side he prefers, tucked snugly in a soft white blanket. We watched him sleep for half an hour longer, then dragged ourselves home (ha, "home") to wait for the preliminary results from the spinal tap.
The news was good. His white cell counts weren't elevated. The culture results wouldn't come in until morning, but by then we'd know what the pathogen was, anyway — a normal white cell count was all we needed to see to rule out meningitis. We ate a late supper and a lot of cookies and slumped into a grateful, exhausted sleep.
This morning as soon as I woke up I called the hospital to see how Charlie was doing. The nurse said he was much better, and told me they were going to restart his feeding. I told her we'd be there for it.
When we got to his isolette, the nurse handed me Charlie's first bottle ever. No hat, no cannula, no syringe screwed to the end of his feeding tube. Just the baby, a blanket, and a bottle, which he sucked back eagerly. Then he immediately fell asleep, breathing comfortably and regularly on my lap for the next hour and a half, Gram-negative rods be damned.
On our way out, we saw the doctor again, who looked grave and said, "You know, yesterday he looked really bad. We were pretty concerned..."
I held up my hand to stop him and said, "I can't listen to that right now." I can't hear how bad it was until the danger has completely passed. I am still too aware that OH, MY GOD, OUR BABY ALMOST DIED to have that notion confirmed.
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I am more grateful than I could ever say that Charlie is doing well today.
He couldn't be any sweeter and more cute than he is. I love his little fuzzy head and big eyes.
Take good care of yourself, mama.
That picture is absolutely gorgeous. I'm so relieved to hear he's doing better today. I can't imagine what a roller coaster all of this has been for you. Hang in there... we're all thinking about your little family.
yay! first feeding! good sucking reflex! yay!
you will all make it through this and you will go home with beautiful Charlie. believe, it is the right season for it!
You got to feed your baby!!!!! Congratulations! This is the best thing I've heard all day.
He is so beautiful. *happy sigh*
First bottle! Go Charlie go!
Wishing you all the strength to get through this.
OH MY GOD. I'm so glad that he's OK and that you're OK.
Gorgeous little guy, but you knew that already.
I am so sorry Baby Charlie had a rough time, even though he personally, was oblivious, and it was his parents having a stroke. That being said....
THAT IS THE CUTEST THING I HAVE EVER SEEN!!! He has the sweetest itty-bitty face on the planet. Suck those bottles down, little guy.
Mia C.
so. darn. cute!
what more could you ask for?
I am relieved to hear baby Charlie is doing much better. He looks happy and content. I hope and pray his health continues to improve and he can go home very soon.
Hooray for Charlie's first oral feeding! I think he's a little precocious--he's not even 33 weeks of gestational age yet, is he? He's also precocious in terms of scaring his folks half to death--I hear the teenage years are the absolute worst in that regard.
Man, I hate apneas. Ben bought himself two reprieves from getting paroled (if that makes sense)--twice he was going to go home in 5 days so long as he didn't have any more apneas, and twice he went ahead and had another apnea and had to stay a bit longer. I understand I promised him a car when he's 16 for stopping the apneas, but he seems to have forgotten that. (Whew!)
Oh, holy hell. No wonder I couldn't rouse you online yesterday.
Now, don't take this the wrong way, but: Charlie sucks! Now how fucking great is that?
Kid is the cutest damned Hoover I ever did see. Whee hee. So glad for you three.
Oh my god. You're my hero, I don't think I could've handled that.
AND A BOTTLE! GO CHARLIE! :)
So glad everything is okay. You had me scared for awhile.
Julie - I am so in love with Charlie. We all know where his fighting spirit comes from.
Now Charlie - repeat after me "no more scaring mom and dad.......at least not until AFTER I get the keys to the car."
Thinking of you all.
I can't address the scariness because it's, well, too damn scary.
Instead I'm going to focus on the bottle and beautiful, beautiful Charlie.
I'm so glad he's drinking ok, and things ae looking better for you. I can only imagen how terrifying that would be.
I am so, so happy to read the end of this today and to see that photo, that gorgeous photo that should be bown up to 8x10 and displayed on the most prominent wall in your living rom...I am weeping with joy to see that you got to give him his first feeding and that he has omproved after that.
You are in my heart and my prayers every day.
Wow. Your words are powerful & I'm usually a word woman, but that photo of Charlie was worth much more than the 1,185 words of your post. He's so heartbreakingly pink and cute. Thanks for sharing that teder moment, one of many many to come, I'm sure.
What hope and wonderfulness! Thank you for sharing that sweet picture.
They have a way of doing that at the NICU not telling you how bad it reallly is until the day after. Like "It is great you baby is in fron now. We keep the deperately ill babies in the back."
He is beautiful. Imagine that. Just a day later.
Glad to hear Charlie is doing better. Hope you are too.
He is just so sweet! Congratulations on feeding him his first bottle. I can't imagine how terrifying yesterday was for you. You are in my thoughts and prayers.
So. Cute.
Oh good god I'm glad he's doing better. He is simply gorgeous. That is the sweetest picture.
Thank God Charlie is better! Here's to him getting stronger every day. (((Hugs))) to you and Paul. I'm sorry that dr. had to be so...ugh! That's just not what a new mommy needs to hear.
Jenn
Dear Universe: Be nice to Charlie! Quit pissing around with the Bat family and play nice!
What an adorable little Charlie he is. :)
By the way, I was telling your story to my cousin, who's a neonatal nurse practitioner. You remember how you were giving yourself a hard time about not going to the hospital sooner? Well, my cousin is pissed as hell at your doctor. What's the hallmark of preeclampsia? Epigastric pain. Hmm, maybe when you called the Tuesday before Thanksgiving, they might have asked you a bit more about that stomachache that was bad enough to make you call the doctor. And by the time you were calling the doctor that Saturday, what the hell is "go to the drugstore and check your blood pressure" all about? Again, cousin pissed. Thought your doctor should have sent you straight to a hospital, not a drugstore. Cousin also says your HELLP probably caused stress to the baby's environment, resulting in a jump start to lung maturation (yay!) even without steroids.
So, to sum up, you did all right by Charlie (I'm sorry you puked and felt miserable for so long), but your doctor needs a good smack and a reminder that pregnant women with stomachaches should get checked out for preeclampsia.
Oh my God, that picture just made me cry. Charlie is beautiful, and his color looks great. He looks really good. Seeing that tiny little preemie bottle and your sweet little boy brought back this flood of memories. I remembered the sweet but sort of chemically smell those bottles had when you tore the plastic open. Wasn't it wonderful to feed him that bottle?
I'm sorry you had such a scary experience. I hope it is absolutely the last one. I was lucky, I never had anything that scary in the NICU. I can only imagine. But in that picture, Charlie looks good. He looks pink and healthy and not at all like a baby with an infection.
Julie, you have to promise us one thing.
When this is all happily behind you and Charlie is a five year old swinging happily on the preschool door, you will publish the entire story as a book. It gives so many people strength and hope, and man lessons.
Keep strong.
Whew. My prayers are with you.
Tears and smiles over here. WOW he sure is beautiful. I'm so glad he is better.
I cannot begin to imagine how frightening yesterday must have been. Thank God your beautiful little boy is doing so much better. Between you, Paul and the attentive hospital staff, it sounds like he's in good hands. Sending lots of love your way.
He's absolutely beautiful. Hope he continues to improve. Will be thinking of you all.
Charlie is the most beautiful sight!!! Those little hands!! next to that little face!!!!!! God you must have been terrified--I sure would have been--but he has bounced back fast, and that HAS to be a good sign.
How scary. My prayers are with you from across the country.
What a great picture -- I am glad the horrifically scary moments are offset a tiny bit by the beautiful ones.
Julie, he's so, so, so beautiful!
I'm so sorry that all of you have had to go though this. I'm a nurse practitioner in a very large hospital, and I deal w/very sick patients all of the time. Most are adults, but some are kids (youngest that I have now is 3.) I'm almost always an the same side of the fence as the staff that's treating Charlie. Thank you for reminding me a little about what it's like to be on the other side. Sometimes when you see sick people and kids all of the time it gets routine. Thank you for reminding me how upsetting it is for them and for their famlies. Thinking about you, Paul and Charlie, I will try even harder to do the right things for my patients and their famlies.
Many people are thinking about you!
Thank you so much for sharing that beautiful picture. Reading the comments, it seems that the Internet felt some reassurance. I know I did.
Sending good vibes to you, Paul, and most of all Charlie...
I am in love with Charlie. Bless him and keep him safely in your arms. Make his momma strong and fierce when she needs to be and gentle and loving all the rest of the time.
Reading your blog brings back so many memories. Our daughter got an infection on the 2nd day in the NICU and was taken off the transplant list. The nurses nicknamed her sparkplug and would tell me that they could always spot a fighter, which was good.
Charlie sounds like a fighter.
Oh, now that is one cute baby...the ducky fuzz hair and little fingers are so sweet.
I'm sorry things have been so difficult. I hope this is the last bump before the smooth ride you all so deserve starts.
He is so lovely. Thank you for sharing. He is a fighter; I have total faith in him, and his amazing desire to kick NICU's butt.
*this* is the picture that made me teary-eyed - what a sweet, fuzzy-headed little man. he looks beautiful, and capable of beating anything that comes his way.
moses, jesus, julie! i cannot even fathom the gamut of emotions you must be going through...i know it's easier said than done, but hold tight...do what you keep doing; it's working. he know's your and paul's touch...it touches me beyond any mucous-filled expression of words. (yours and mine)
he's gonna be even spunkier than you! and holy precious, batman! did you guys make a beautiful child!
iam so proud of you and glad every one is ok
Goodness gracious what a horrifying story!!! I am so, SO thankful that little man is doing better. That picture, oh..that picture!! I love his blonde little hair and those hands and those eyes!!! Bless your family!
He made it... that's what matters! Kick ass about the first bottle feeding.
Hang in there Batman. Love, Robin
So glad he's doing better and looking so beautiful and healthy.
Terrifying story. But oh! That photo says it all.
Lovely, lovely boy.
He is so beautiful! But man, when he gets older you are going to have to ground him good for this past experience...
Glorious picture. Scary story. Will keep fingers crossed for more glorious and less scary for you...