Also on the List: My Daughter’s Cardiologist, My Daughter’s Oncologist, and My Daughter’s Plastic Surgeon. *UPDATED*
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.





154 Comments
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.
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.)
hang in there. i do not know how you bear this insanity. hoping to hear better news tomorrow!
Dear Alexa, it’s just past five a.m. here and I just had to log on to see how you were. Thanks for the update. I am hoping with every fiber of my being that this night works its healing magic on Simone, and that tomorrow morning finds her kidneys and her leg and her whole little body completely recovered. Sending all the love and all the strength I can across the Atlantic and into her isolette.
Wishing I could be there for you and Scott in some way that would really help. Just please know that you are constantly in my thoughts.
I cannot believe all you’re going through. You are in my prayers.
Oh, what an unrelenting roller coaster you’ve been on. Take care of yourself and each other and let the rest go. You guys are in my prayers and thoughts.
Thinking of you.
Holy shitstorm. Keeping you and yours in my thoughts/hopes/prayers/etc.
Oh. The Damn Roller Coaster.
I continually pray for you and Scott and Simone. Tonight, my daughters prayed for little Simone as well. It was very sweet, their little voices with “Simone” on their lips…
Waiting for the up-turn…
Your daughter sounds like mine did in the NICU. The docs would say, “Well, that probably won’t happen” and then later, “Huh, well looks like that happened.” It was so frustrating because it felt like most everything that could happen would happen and sometimes still does (last week she was in the eight percentile of RSV infected kids who had a false negative on a rapid screening). It was also frustrating when people said, “Oh, and the girls are usually so much stronger” as if she was failing her gender by struggling. She eventually overcame many of her issues and is doing fairly well now so now I just look back and shake my head. I hope the same will happen to you. XO
oh and i used to stand at her isolette and chant/whisper, “go baby go, go baby go, go baby, go baby, go baby go!” and maybe it helped? i also told the hospital chaplin that i was mad at God and she told me that sometimes anger itself is a prayer and an acknowledgement of the divine. i don’t know why but it seemed to help.
It’s not right, and it’s not fair. Some people give birth to children and find God in the experience. I nearly had the opposite reaction as I can’t believe there is a God that had a hand in this world that would ever allow a child to hurt. I am so sorry that you’re family is going through this.
My wishes are all with Simone getting back on the road to wellness and kick-assness-sess. OK, that’s not a word, but really? It’s right.
(hope I didn’t offend you with any religion speak - it’s not usually my style)
You are seriously the toughest motherfucker I have ever had the fortune to meet. And I am including Will Smith in that, just so you know.
Thinking of you and hoping, hoping.
The help you need is inside yourself, and your husband, and I hope and pray you find it. No agony is worse than this, and I hope it ends soon with better days.
You have such a tough, tough little girl. You are such a tough, tough mama.
We’re all sending prayers and love.
Oh girl, my heart goes out to you! I am praying very hard.
Another NICU mom sending a huge hug your way. My boys were born at 28 weeks and managed to have just about every complication you can think of…it got so bad that I told the doctors to not tell me the statistics. We would always be the 2% or 5% that had adverse affects from procedures and medications. We used to joke in our sarcastic way that we should go bet against ourselves in Vegas so we could strike it rich.
It was beyond hard to go through, but the boys were fighters, just like your little Simmone is. Much love to you all.
More prayers from Canberra, Australia. Breathe in, breathe out, another minute of the day over. Hopefully tomorrow will bring better news for Simone. It’s so lovely seeing all of these people sending good thoughts and wishes your way. With so many people praying for you there just HAS to be better news soon for you.
love Jules
Third comment from me, just to say my 14 year old daughter, the former preemie, looked again at Simone’s photos and asked me to send her best wishes. She assures you she doesn’t remember a thing and everything passes and she feels completely normal. Her best friend was a preemie, too, and she is fine, too. They are even proud to have proved themselves fighters so early on.
She will tell her friend about Simone and both girls will keep her in their thoughts.
Prayers from Israel for Simone and for you and Scott. I can’t stop thinking about you and your beautiful little girl and praying that Simone comes out of this just fine.
Sorry about the downs — another voice here pulling for some ups. Big, gravity defying, heartwarming ups.
Go, Simone, and hang on, Alexa and Scott.
Hoping and praying for you all.
Lump in my throat, prayers and thoughts in my heart for all of you.
You guys are overdue for a long run of good luck. I’m sending as much positivity as I can your way.
I am sending love and prayers and strength to Simone and to your family, and wisdom to the doctors to figure out how to fix this. Thank you for keeping us all posted.
Love, Laura
You keep thinking positively, Alexa - we’ll slap those pesky Fates down. Sending Simone, Scott and you lots of good thoughts and energy from Arizona.
Simone is such a fighter. Soon, she will put her little hand up and tell the team of “ists” to back off and let her take care of things. Sending prayers and good thoughts and virtual hugs.
I’ve only just come across your blog today (through a link from “A Little Bit Pregnant”) but I just want to tell you that my prayers and hopes are with your beautiful little girl and with her parents.
sending my love towards your family.
Thinking of you and your sweet girl.
Some more Minnesota well wishes from another you don’t know in internet land. Keep your chin up and know that there are so VERY many people thinking of your family right now.
You continue to absolutely floor me with your grace. I hope rounds go beautifully today. Simone is astounding and she will continue to astound.
Prayers and good thoughts coming for Simone, you, and Scott. I’m so sorry you are going through this and hope you will be able to post a positive update soon.
Sending you good thoughts and wishes- I’ve been thinking of you & Simone all day.
Stay strong Simone! I hope to see good news posted soon. Sending lots of thoughts and prayers from iowa to you! Hang in there!
Delurking to say that I am rooting for you all so hard (like the above poster, Nicole, I’m in Iowa, sending good vibes northward)…..
Found your blog through Julie at alittlepregnant, and wanted to say…I don’t even know what to say. My heart keeps saying, “Poor baby” and “Brave baby!” and “Hang on, little baby.” Many prayers are with you, and good wishes.
I just wanted to wish you lots of luck and calm vibes, I have been through this with my daughter (now 2) and my niece (now 12) neither expected to make it through the first 24 hours. If you have good news then please enjoy it, SCBU is a tough time for any parent particularly a Mommy.
When she comes home you won’t forget this time but it will seem so unimportant as you will have Simone in your arms probably trying to suck your nipple off! Lots of love from one tiny tot Mommy to another xxx
Just found your update. Sending hugs and hoping that today is a better day.
Simone, you BE TOUGH. I’m just refreshing, and hoping, and crying right along with you.
Prayers and positive thoughts from France
My thoughts are with you, Scott and Simone.
“sending help” via thoughts and prayers. and hoping, with all my heart, that they work.
all the best,
karen
Thinking of you all and praying. Come on Simone! Your mommy wants you healthy and home!!!
Thinking of Simone and you and Scott, fingers tightly crossed.
Milrinone is also a vasodialater (a little more ‘old school’, but good stuff) - might be worth mentioning. It can help with profusion.
Another NICU/CICU/PICU mom is thinking of you and your family tonight…((hugs)) to you all…
I’m so sorry - I know this rollercoaster all too well having had a baby in the NICU for 3 months. So much of what you write reminds me of what we went through. The sickest babies could make miraculous turn arounds, we saw it over and over. Your little girl sounds like a real fighter. I hope things are UP again soon.
Of course Scott is right - the ups really DON’T cause the downs, but man, it’s easy to feel like the moment you let your guard down something truly awful will happen. Just remember that although things may be horribly and wildly out of your control, you *are* doing the very best you can to mother Simone through this. Don’t downplay your contributions, she knows you’re there loving her!
You are all doing your best to play the hand you’ve been dealt, and playing it well. I love the picture of you holding her, and boy, is she a beautiful 29 week-old. For what it’s worth, she *looks* like a survivor. Wishing you well…
I didn’t mean to go so crazy with the “religion” thing. But, I am still praying for Simone and you and Scott. I have her name written down on a piece of heart-shaped paper and have it with me all the time except when I am sleeping. I pray for her often. I hope things are going well. I hope they did an angiogram to check for blood clots, and then blasted them away. I hope all is well.
Sending you all my prayers.
Wishing your beautiful little girl great strength and resilience and sending all the positive energy I can from Los Angeles, California.
Sending more prayers and love, and eager to hear whatever news you have–but hoping for good, good news.
Delurking to offer my prayers for Simone, and for you & Scott. I’ll be keeping you all in my thoughts.
Sending positive thoughts to you, Scott and little Simone. I have mentioned before that I have a friend whose first daughter was born 3 months premature back in the 1980’s (she’s now in college). When my friend’s daughter was in neonatal care during the three months or so it took before she could bring her home, my friend said it was such torture that she wouldn’t wish it on her worst enemy. Thinking of you and hoping your torture turns to nothing but happiness very soon!!!
Sending all the internet help that I can. I’m keeping my fingers & toes crossed for Simone, and positive thoughts to you and Scott.
I could eat some chocolate on your behalf if you’d like. I always find that chocolate helps everything.
Another former NICU mom (31 weeks, 2.5 months in the NICU) delurking to say that I am thinking of you, Scott, and Simone, and hoping the roller coaster ride becomes less nauseatingly torturous in the coming days and weeks. It killed me to realize that my child had more medical procedures and specialists in the first few days of life than I had in my entire life. But when I see the result of all that NICU torture (happy, healthy 16 month old driving mommy a little crazy with his daredevil tendencies), I realize the pokes, prods, and more invasive procedures were worth it.