The big news today was supposed to be a trial of extubation. Simone has a large air leak around her tube that makes her sound like a flock of geese, probably because she has outgrown said tube and needs the next size up. So as long as they were pulling it out, quoth the neonatologist, why not give her a chance to try breathing like a big(ger) girl on rated CPAP instead of a ventilator? If it didn’t work, they could reintubate with the larger tube. After all, she is doing so well!
There was much rejoicing Chez Flotsam, and last night I forgot my usual call to the NICU when I was up to pump. As we drove to the hospital this morning I tried to amuse Scott with my Ramones-esque rendition of “I Wanna Be Extubated.”
You see where this is going, right?
Sometime after midnight the nurse changing Simone’s diaper found blood there. There was bruising above her groin, and one of her legs seemed less pink than the other. Her creatinine was up. By the time we arrived an ultrasound had been ordered, and within an hour my favorite nurse practitioner returned with the news: Simone has decreased blood flow to both kidneys, and what looks like a clot in her aorta, probably from the umbilical arterial catheter that was removed a few days ago. There does not appear to be anything obstructing blood flow to the renal vessels, so it may be that something is causing them to constrict. I got all excited and thought for a moment that I had solved the riddle and the answer was Dopamine (low doses increase blood flow to the kidneys while higher doses—like Simone is on—can vasoconstrict peripheral vessels) but they don’t think that is it, so there goes my career in neonatology. I guess Wikipedia and House episodes really aren’t enough.
A repeat ultrasound of her aorta was just done to see whether the thing the radiologist thought was a clot really is a clot, and we should have the results in a few hours. They are also trying for the second time to draw blood for labs: earlier it took sticks to several veins in her tennis-ball-sized head before they were finished, and then the sample clotted and was unusable. My baby also gets a bladder tap (her second), because they were unable to get a urine sample via catheter. Her respiratory status has worsened, probably as a result of stress. Her feeds have been stopped, and as for extubation? Ha.
If there is indeed a clot, she will be started on heparin, but that is not expected to dissolve the offending coagulation in the speedy and efficient fashion I would like—apparently these clots have a tendency to calcify. Or something. I was busy trying not to sob at that point in the conversation, so I will have to clarify a few points later. Anyway, the hope is that the heparin will reduce the size of the clot enough that Simone’s body can gradually get rid of it on its own, preferably without throwing deadly clotlets to her heart or lungs. Additionally, it would be best if this resolved before she permanently loses kidney function or, you know, her leg. How exactly the reduced renal blood flow is related to the possible aortic clot when there is no obstruction of the renal vessels is beyond my limited scope, but I imagine my daughter’s nephrologist will explain.
There is a phrase I hoped never to use: my daughter’s nephrologist.
Scott keeps reminding me that my happiness when things are going well is not an invitation to the fates to reduce our surroundings to rubble. Even though the evidence suggests differently, correlation does not causation make. Though I don’t suppose it matters in the end, as the result is the same: we are in a bad place. Send help.
Update, 7:00 p.m.:
So, according to the radiologist, the Thing In The Aorta is either a “thin clot” or a “fibrin sheath.” Though it sounds like a condom varietal, a fibrin sheath is actually a pre-clot that may have formed around the umbilical catheter and remained behind when the catheter was removed. Whatever it is, this Thing In The Aorta is not obstructing blood flow, and would not be responsible for Simone’s renal problems. Her clotting panel was normal. No word yet on what is causing the decreased flow to her kidney’s or her dusky and slightly swollen left leg. The thought at the moment is that the removal of the umbilical line sent a cascade of small clots into the bloodstream to wreak havoc. I hope to know more after rounds tomorrow morning.
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I hope for you.
I’m sending hope, prayers and good vibes your way. My best friend was born way too early. She has Muscular Dystrophy and she walks with a ferocious limp but she’s the funniest and smartest person I know and a top-notch lawyer. Medicine can work wonders. My best to the three of you.
Sending prayer after prayer and positive thoughts your way, now as always. Alexa, the Mind/Body group is thinking about you and pulling for you. Come on, little Simone. You can do it!
God, what a roller coaster you are on. Let’s hope this car goes up now.
Wishing you all the best. (((hugs)))
Thinking of you and your darling Simone
Only good thoughts coming your way from Boston. She is a beautiful girl!
There is a God, and He is real. Sometimes we don’t like what He decides, and it’s very hard to try to understand how much He loves us. He does love us very much, and He rules the world. I am a believer and I try very hard to live that way, but I’m not always successful. I am praying for you, for Scott and for Simone. I pray that this loving God reaches His mighty hands into Simone’s isolette and heals her with His ultimate healing power. I pray that God heals her kidneys back to their normal state. I pray that God shatters the blood clots in Simone’s body. I pray that God heals her aorta back to its normal state. I pray that God be there and send guard angels to be around Simone’s isolette, within the NICU, assisting the doctors and nurses in her care. I pray the peace of God that no one else understands on you Alexa and Scott. I pray for peace in your immediate worlds. I pray that God will hold Simone in the palm of His mighty hand and blow healing breezes over her tiny body.
Simone (and Ames) were made in His image and likeness. I am praying these things for you right now and will continue to do so. I pray comfort for little Simone right at this very moment. I like this saying, even though it’s hard for me also sometimes: “Faith is not believing that God can, it is knowing that He will.”
I promise to continue with my prayers for your family, and that right now, the peace of God reigns in your immediate worlds and surrounding Simone.
Many prayers and thoughts are coming your way, hoping Simone manages to surpase this hurdle quickly.
Your wonderful little girl may be a tad titchy, but she’s sure to show you she’s lots tougher than she looks. And when you’re pushing her pram in the park and she’s giving you her best gummy smile, it’ll feel so much sweeter for you & Scott after the gut-wrenching hell you’ve gone through. Remember that your daughter’s doctors (and I’m so sorry she needs so many) will have successfully treated smaller and younger babies than Simone: there’s no crisis in NICU that they won’t have seen before. Praying that your lives improve by a factor of HUGE pretty damn rapidly!
Also: I know that the NICU is the best route,
bar none, to shed those pregnancy pounds… don’t forget to keep yourself fed & watered properly. It’s allowed!
Alexa, saying many prayers for all of you, and hoping Simone will soon do one of her trademark changes of direction.
I’m so sorry to hear your beautiful little girl is going through so much. She has proven she is such a fighter again and again. I’m thinking of both of you and Scott and sending lots of positive thoughts.
Somewhere above someone wrote one step forward, two steps back. I hope this is the last step back.
Thinking of Simone, you and Scott.
praying, long and hard, be strong little one, your mommy needs you to get well…praying with all my heart
Poor baby. Can’t catch a break. Praying down here in Texas for her.
Your family is in my thoughts and prayers. Hugs to you all.
Another NICU momma giving you prayers. I know our stay was different from yours but I know how scared you are and I’m thinking about you guys constantly, fretting a worrying and staying positive!! She is definitely a strong little girl and as another commentor said and I heard while about to deliver my two pounder, they’ve treated worse! NICU technology has come such a long way so you are in good hands. And fuck the bad nurse. I had one too and I requested to not have her again and I didn’t!
my thoughts and prayers are with you all. hang in there.
I’m praying for you and Simone. It’s the best help I know how to send. And I’m rallying my friends to do the same.
Much love, dear. Much love.
Sending you my love, I really can’t tell you how much I am hoping this resolves and things end well. I am thinking of all of you every day, many, many times.
When we were in the NICU parents used to bring graduates back to visit primary nurses – to say hello, marvel at growth, giggle and share clever baby tricks.
I used to stare at them with such envy, thinking that would never be us.. feeling like this was a hole we’d never escape from – the ups and downs were so fucking relentless.
I know it doesn’t really help to say “you are not alone in this”, but what maybe does, a little, is to know that there are people out here sending all our hopes and hearts to you and Simone – and among them, those of us who have been through the same thing. Those of us who had nephrologists too, and who read your words nodding, remembering how it felt to be inside that place.
Company like that always made me feel a little less crazy, anyway – and if that’s all I can give you right now, that’s something.
You’re doing all the right things – you’ve got your sleeves rolled up, learning the language. Be kind to yourselves, and love to Simone. We’re all cheering for you out here.
xo
Strong, healthy thoughts are on their way to Simone. I’ll visualize her pink, wiggly & in ner mama’s arms.
All love to Simone. All strength to you and Scott. Hang in, brave family.
Pulling for you. Pulling very hard. I wish I could do more.
Oh, this was not the news I hoped to read today. Come on, Simone! Stop scaring Mom and Dad!
Sending you prayers of support and help. I’ll put a priority on the Help arriving. Hang in there.
I’m not normally a pray-er, but I’ll gladly make an exception here. Sending warm thoughts your way.
My thoughts are with you and Simone.
We are praying for you and holding you close in our hearts.
Damn it, can’t you ever catch a break? Just once? I’m praying hard that Simone makes it through all this with all key body parts intact. Thinking of you…
Be strong Simone.
Saying prayers for you all.
I know there aren’t words that can make it better, but my thoughts and prayers are with you and Scott and your little girl.
tomorrow is such a long time from now. will be anxious for your next bit of news and am hoping with all that is in me that it is news that is positive and not panic-inducing and that Simone’s kick-ass fighter self will let whatever this is in her system know that it is UNWANTED and can step the hell off already.
Just wanted to say that I am thinking about you, and pulling for Simone.
Oh, sweet little Simone! You have pulled through so many times already, please gather up your tiny strength and miraculous resilience and do it again, little one!
Just read your update, please, please keep us posted. Have a stream of prayers going your way. I hated the see saw of the NICU as well, but little Simone seems like a prize fighter and you seem to have a great team around you.
I can only imagine how exhausting it must be to remain at that high pitch of emotion all the time–those extremes of high and low. Lots of good thoughts for Simone through this latest challenge.
Oh argh! I’ll definitely be thinking of you and little Simone.
I don’t know how you are upright and I don’t know how you maintain the wit you do. I really cannot wait for this chapter to move on to the “Back at home” chapter. I know with every scintilla of my being this child is going to be endlessly entertaining!
Hang in there you amazing, mama, you.
hoping hoping hoping for good news for little simone and her paretns.
You are in my thoughts.
Oh, Alexa-
You, Scott and Simone are never far from my thoughts and prayers.
Brave little girl, keep up your awesome fight.
Deb
Sending every positive, healing thought I can muster.
Your precious girl will be in my prayers.
Alexa/Scott,
You could ask the doctors to do an angiogram on her leg – make sure there is no clot there. Someone earlier suggested tPA, which is clot busting medicine (or rPA, same thing, generic). She should be having some type of scan of her renal area and her leg.
I have Simone’s name written on a piece of paper that is with me 24/7 and everytime I look at it, I am praying for her.
Lord I ask, that since you are the one who created little Simone, and you know how her body works, that you go into her kidney area and heal her kidneys with your mighty hands. I ask Lord, that you heal little Simone’s left leg. I also ask Lord, that you reign peace on Scott and Alexa tonight as they try to rest. In Jesus Name, Amen!
Thinking of you all,
J
Sending lots of love and hope your way.
I can’t fathom the difficulty; I have tears in my eyes.
You’re a great mom for simply keeping your sanity, I think.
Thank you for the update, for thinking of us at all.
You’re such a good Mom. Thought you should know.
Sending good thoughts your family’s way.
(Also, fuck. Really. I’ve no words.)
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