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Okay so I'm going to warn again...some of these pictures can be disturbing. They are of Lily during the roughest time in her life. You have been warned. Don't look further down if you are easily bothered.
I was recently reading Cora's story. She's a 5 day old that died while her mom was BFing her because of an undetected CHD. I've read it regularly and I cry every time. After I read it, I started looking at my blog (that I've half abandoned), but that I talk about the first few months of Lily's life in. Then I saw the pictures. And I remembered.
It used to bother me so badly to even look at these pictures. I took them because they were important, but God, I could barely look at them. They hurt. Even now, they hurt to see. But, I was doing a cover photo for facebook talking about the importance of pulse oximetry screening and I had captioned it "Pulse Ox - Because I'd rather see this (pointing at a surgery photo) than this (pointing at a gravestone)"
I know many of you have said you will get your babies tested, and I'm so thankful for that. I'm also aware that we have lurkers from other DDCs and people who might have shrugged off my pokes for pulse ox testing. So...
The first one is Lily in the CICU (Cardiac Intensive Care Unit) prior to surgery. It is the last photo I have of her without the OHS (open heart surgery) scar on her chest. She was on life support and they had tied her arms to her legs to keep her from flailing and pulling her tube out. She was 3.5 months old.
The second one is a few hours after her OHS. Once I'd pulled myself together. This photo doesn't do justice to how....gray and lifeless she looked. They had her on a paralytic so she basically didn't even twitch. The first look at her after surgery nearly brought me to my knees. I held it together long enough to get out of the room before I lost it. (Of note: In the second picture, Look at her feet and you will see it. THAT is the 'pulse ox' I've talked so much about.)
The third one is where we actually weren't too far off from being discharged. Some friends (March Mommies) had sent Lily some flowers and Harry (the stuffed animal she's pictured with).
How true it is... I'd rather see those pictures any day than visiting Lily at a grave. That was the roughest time in her life, in my life, and I'd do it again in a second if the alternative was visiting her grave.
I'll do it with George, too, if I have to. But, God, I hope I don't have to. I'm filled with anxiety lately over this. I'll go through it again if need be...but I feel like twice will break me.
...and because I felt like I needed a giggle after sharing those ones..
Here's Lily yelling at me. (the tube you see coming out of her belly is her g-tube. That was how we got to bring her home. Agreed to have that tube inserted to feed her. We stepped up to a mick-key not long thereafter.)
aww, Im sorry you had to go through this. I have friends with HLHS so I have seen some pretty graphic OHS pics in littles before. It is terrible to read Coras story. So so sad. I hope George is a healthy baby girl and Liliy has a long, long life ahead of her. Much love to ya!
Hugs to you both, she is beautiful and obviously a fighter. I know sometimes these stories are hard to read but I think they need to be shared, sick babies deserve to have their story told. Praying George has no issues
Is a pulse ox test something that is routinely done on newborns in the hospital? I've had mine taken several times but I don't recall if they did one on DD1 in the hospital.
In some states, in some hospitals, it is now routinely done but that is a huge and NEW advancement. Some states screen, but only like every 1 in 25 babies.
The best thing you can possibly do is to call the hospital where you plan to deliver, and ask them if pulse-ox is part of the newborn screening tests. If they say no, explain that is where you will be delivering, and you are requesting that one be performed.
I asked my doctor about it and he said they don't do them regularly, only on babies that look like they are having problems, but that if I want one I can have it done.
Good for you for asking!
I hate that.. "only on babies that look like they're having problems". Because every single problem is always SO easily seen, of course.
Lily's disease is called an "invisible illness" - Why? Because just eyeballing her..unless she's having a really bad day...she LOOKS perfectly healthy. If you took a peek inside her, you'd see her pulmonary artery is enlarged and thick. You'd see one of her lungs is smaller with not as many blood vessels. You'd see that her heart has a hole in the wall that seperates the upper two chambers. You'd see that her aortic valve only has two flaps, not three. You'd see that her left bronchus is trapped between her pulmonary artery and her aorta. You'd see that the malformed lung is always a little bit more inflated than the other one is, because the narrowed bronchus means she has trouble getting air out of her lung.
You'd SEE a whole heck of a lot - if you could peek inside her - but since, God forbid, none of those defects are visible on the outside - then obviously she must be fine. /eyeroll
Even when she's having a bad day, its not like there's a big flashing Neon sign saying "she's sick! SHE'S SICK!" - What you see is a slight blue tinge to her skin, more noticeable around her lips and fingertips. What you see is her saying "I'm tired" before she should be tired. You see lounging on the couch, content to not do much at at all - which is not normal for her. She's very get-up-and-go. You hear her breathing more quickly and harder. She might even tell you "mommy, my chest hurts" or "I hurt" or "I don't feel very good"...but its not like her bad days instantly transform her into someone who *looks* extremely ill.
We KNOW - WE. FLIPPING. KNOW. that somewhere around 1 out of 100/125 children are born with a congenital heart defect. WE KNOW THIS - and yet we don't screen for possible heart defects 'unless they look like they're having a problem'. What utter and complete bullcrap!!
How in the HECK is it okay to not do a pulse ox? How can we, knowing what we know about the prevalance of CHDs, plug our ears and close our eyes and just pretend that every baby is fine? How can the people in charge of doing the newborn screenings let babies go home with their parents KNOWING that there is such a chance that they might be sending that baby home with a serious defect that they could have screened for...one that could kill them? They COULD have screened for it. They just didn't. Because it might take 30 seconds longer. Because it costs for the equipment. Because, God forbid, they spend a little extra time to spare a family heartache.
And how can anyone, having been exposed to - if nothing else -the number of children born each year in the US with a heart defect - not have the balls to demand their child be screened if it is not part of the normal process? How can that be risked?? How STUPID do you (general, not you specifically) have to be to ignore such a common problem?!
You've probably talked about this before but I can't remember, was Lily tested at birth or did they discover it over time as she started having difficulties?
Lily passed her newborn screening (which did not include a pulse ox) with flying colors.
My mom came to see us that day - and noticed she was turning purple when she cried. I had noticed it too, but didn't think twice about it because "Eh, she's screaming her head off. Of *course* she's off-color. I would be too if I cried that much!" My mom mentioned it to a nurse, who noted that it was a little unusual.
I had Lily at 1:12 am Saturday morning. There was no further testing done on her, even though it was noted that her color was off, until the pediatric check-up performed prior to release from the hospital, at 7:00 pm. At about 7:30 pm, the doctor came up and told me that Lily had a hole in her heart.
Here's a scary part...it almost went undetected. Apparently the hole in Lily's heart was SO big that her heart sounded almost normal!
She was immediately admitted into the NICU. Transferred to Children's Hospital on Tuesday. That's where they diagnosed everything else.
Wow what a scary situation. There was a boy in the next bed to my daughter's in the NICU that had something similar I think, he was a tiny little thing 5lbs, with a relatively fresh surgical incision down his chest. The mom told me that the U/S never detected anything and they didn't know anything was wrong until a day or 2 after birth. It really is more common then most people realize
Just curious: Did you have a fetal echo done that came back normal?
No. There was no reason from the Ultrasounds to expect that a fetal echo was even needed, so they never did one.
Originally Posted by LeedaRenee
I still can't believe they don't do a pulse ox on every kid born. I guess the cost of the sat probe factors in?
Most likely the cost of the probe probably does figure in, even though its complete bullcrap. You can get a pediatric pulse-ox on the web for 50.00!!
I looked up the pulse oximeters that I've seen CHOC use. A whopping $285.00. There is no reason why that low of a cost, spread over hundreds of babies, should even be an issue. My view: We pay ...what...at LEAST $15,000.00 for a normal uncomplicated delivery? They can afford the flipping pulse ox!
Thank you for telling people about this. I knew nothing about this test and wouldn't have known to ask for it. When I went in to have my daughter, before they started the induction, I asked for this test to be done and I was informed that they do them on every baby. I was very happy! This isn't law in Iowa to do, so I was glad that they do them even though it's not mandatory. Fortunately, Evelyn's test came back good. Thank you again for letting us know to ask for it.
Also, your daughter is BEAUTIFUL and a real fighter!
Krystal mommy to Alexander-7, Elizabeth-3 and our baby Morgan born with Angel Wings 2-27-08