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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Praying for you & Simone right now.
Prayers, prayers, good wishes, from my heart. I hardly leave your page just to catch news about Simone as they get out.
Oh, dear, sending all the best wishes I can. There isn’t really any more to say than that. Be strong, all three of you.
My goodness. I’ve been reading along through the trials you’re going through, and haven’t really known what to say! I still don’t, except to know that I’m sending all the karma I can spare, and then some, to Simone and you both as well. She’s a trooper, that little girl.
More praying coming from the Midwest.
Lots of love and positive thoughts comin’ at ‘cha.
I’m so sorry that your family is going through this. I’m hoping, hoping, hoping and praying, praying, praying for Simone to be doing better soon. Thinking of you guys and pulling for you.
Maybe you could ask her doctors about starting her on recombinant TPA, heparin and fresh frozen plasma.
What about a Greenfield filter?
Just trying to help….you’re both in our thoughts and prayers
Am sending constant thoughts and good wishes.
hi alexa – just letting you know that my thoughts are with you. I’m a perinatologist, so not very helpful at this point (i know, where was I about 6 weeks ago), but thinking good things for simone regardless. Good luck, stay strong
another person you don’t know from the internet sending you and your family prayers. you can do it Simone!
Keeping you and Simone in my thoughts and prayers. If you ever need to talk to another preemie mom, please feel free to e-mail.
Sending prayers. For what it’s worth, when you’re the mom of a micropreemie, you usually end up with a lot of ‘ologists.’ And this in no way helps you now or makes you feel better, and nothing I say or do will. You will find that when Simone has a good day, you will have a good day, and when she has a bad one so will you. Soon you’ll feel like not telling people what is going on because you don’t want to ‘jinx it.’ The biggest problem in the NICU, by far, is the waiting. You have to wait for one problem to be fixed, only to find another problem that needs to be fixed… and then you wait. “The Waiting Place” by Dr. Suess will start to make sense in a way that you never thought possible. The bottom line is you’re not alone. I will keep you in my thoughts and prayers. Remember, these little ones are resilliant!
Sending you all much love and hopes that your sweet girl is doing better soon.
You’ve all been through so much… Sending you healing and positive vibes that Simone remains such a strong little girl.
Dear Alexa, sending love and fervent, fervent hope. Recover quickly, little Simone. You and your parents are constantly in my thoughts.
The roller coaster of the NICU is so freaking hard. I am so sorry. My son was a 25 weeker — weighing 1 pound 10 ounces — and I know all too well what you are going through. You have all my thoughts and well wishes.
Isaac is now 2 1/2 years old and “normal” in every way after his 99 day stay in three different hospitals. We, too, dealt with the various ventilators, PDA ligation, impaired kidney function, a terrible round of pneumonia, and a whole host of other things.
Please feel free to email me if you have questions or just need some support!
From a Mama that’s been there,
Erin
Oh, by the way, She is BEAUTIFUL! In my mind, there is nothing more lovely than one of those tiny preemies. I will never be able to look at a micro-preemie picture without the whole host of emotions — awe, inspiration, fear, etc. I think micro-preemies are just beautiful, but of course, I have a baby that looked just like Simone in his first days of life!
Erin
sending lots of prayers and hope from idaho.
Alexa, I was in a bad-ish (from my lame perspective) place today, and for a while there all I could do was weep over and over, “Please send help.” It breaks my heart to see that echoed in your post, knowing how scary is the place you are in.
I haven’t been where you are, and I wish that I could send the kind of help I know you want. For now all I can send is love, and prayers that the right kind of help is on its way.
I wish I had a magic wand to poof away all this pain. Instead, I am sending all of the hope I can muster your way. Lots of love and cozy thoughts too.
Sending my thoughts and prayers your way from Dallas!!! Praying for strenth and healing for little Simone and peace for you and your husband. Thanks for keeping us posted!!!!
I don’t think I can find a word that quantifies the positive thoughts and prayers we are sending your way. I just hope they work and comfort you. Tell Simone she was a tremendously large cheering section!
If positive internet thinking holds any power… I’m adding my prayers!
Another reader sending positive thoughts and strength your way.
Seems as though a lot of us will tell you about the roller coaster and how hard it can be and how you’re not alone, but none of that ever seems to help. Didn’t help me. and I agree with a previous poster…you’ll eventually not want to talk about any of it. Not only for fear of jinxing something, but from being so bloody tired of not only Living it, but repeating it to everyone over and over. And it’s hard enough dealing with it in the first place, let alone giving a re-cap to everyone you know.
My thoughts are with you and I hope that she comes through this all ok. Many, many hugs to you and that sweet little girl!
Thinking of your family and doing double time on the healing vibes going out to Simone.
adding to the chorus– sending every thought and hope and wish simone’s way.
sendings prayers for miracles for your family.
Posting again because I sounded SO negative in my post! Sorry!
I’m just trying- in my horrible way- to let you know that I understand, to a point(my earliest was 30 weeks), how hard it can be. I wish I could wave a magic wand and make her better.
If I could do that, I’d have fixed my own uterus years ago ;).
More hugs your way!
Just one more person thinking of you, your husband and beautiful baby girl.
Prayers, vibes, positive thoughts, good wishes coming your way. Fight, Simone, fight!
My heart was in my throat reading this. Oh, you guys. If it helps at ALL to know that people are thinking of you, know this: people are thinking of you.
I’m just up the street, sending all of my best thoughts and wishes your way. She is absolutely beautiful and you’re doing way better than I think I ever could. You amaze me.
Preemies : The Essential Guide for Parents of Premature Babies
by Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron M.D.
Helped me so much during our 90 days in the NICU. I remember all the phone calls during the night, the ups and downs and the terrible fear and helplessness … and today my daughter continues to be a tiny little warrior, just beginning to sit up and nearly a year old. When she was born her leg was the circumference of my ring.
Breathe as much as you can, rely on the nurses, your family and other parents and one day you will show Simone how tiny she once was and no one will believe it.
Oh, my heart hurts for you, honey. I’d pray if I were a praying person, but since I’m not, I’ll be wishing and hoping and crossing every last little thing for you and Simone and Scott.
Oh, my goodness, you are in my thoughts. Be well and continue to be brave, little Simone! I hope you have super comfortable Kleenex, Alexa, and that you don’t have to use them too often.
Sending you all the good wishes and positive thoughts I can conjure. I’m sorry for all that you, Simone and Scott are going through. Please take care.
My GOD. All my thoughts and hopes are with you. From what we have seen of Simone so far, she must be unstoppable, not matter what the EVIL EVIL fates seem intent on throwing her (your) way.
ALL our thoughts. If I could do anything I would. I wish I were there just so I could clean litter boxes and buy groceries and put gas in your car.
god damnit.
Sending big, huge hopes and wishes and happy, happy thoughts at you direct from my heart/California!!!
Feeling so helpless out here in cyber land. Praying so hard for little Simone and her lovely parents.
Oh gosh. Doubling, tripling, quadrupaling the prayers I’m sending your way.
Oh bollocks.
I just keep remembering julie’s post and the ‘two steps forward, one step back’ thing. Hoping it doesn’t take too long to resolve this particular issue.
Oh Alexa and Scott and Simone, I am thinking of you all today and sending you all of the good vibrations I can manage to squeeze through the Internet.
*hugs*
*love*
Sending you bigtime love, Alexa, Scott and Simone. This sucks, and I’m so sorry.
xoxoxo and know that there is an entire cheering squad for you here in Vermont.
Sending positive vibes from Australia to you. Simone is so beautiful, thank you for sharing your courageous story.
Like everyone else, I’m feeling terribly helpless and wishing there was something I could do other than send good thoughts your way. Simone is so strong to have made it through all of this…and you and Scott are even stronger. Hoping you get to snuggle your little girl again very very soon!
Oh, God. You poor thing. Your little fighter is in my thoughts.
Praying for you all.
i hate that zombie movie you’re stuck in.
sending love your way.
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