This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Wednesday, October 28, 2009

Separation Anxiety

I had to call Beth (Scarlett's cardiologist) tonight to ask if it was okay to feed her 1 ounce every hour versus 3 ounces every 3 hours. Just to get something in Scarlett's gut in the short term, instead of making her wait 3 hours to get something in her tummy. She said it was not preferred, but okay for now. Eventually we want Scarlett's tummy to expand/contract for a 'full' feeding (3-4 ounces) rather than just 1 ounce per feeding. Makes sense, but I still wanted to start small for now.

So from 6-9pm, I gave her one ounce (50% Pedialyte / 50% lactose-free breastmilk) on the hour. She tolerated her feeds rather well. She spit up only once, but it was exactly that...spit up. Not barf. Thank God. Then around midnight I tube-fed her 3 ounces (of my 50/50 concoction) and so far she's keeping it down. yay!

While I was talking to Beth, she mentioned to me that it's quite possible that Scarlett is suffering from separation anxiety. She said it's common in this age group. Evidentally between the ages of 8 months and 1 year, is when separation anxiety is first likely to appear. Beth (unbeknownst to her) practically had me in tears talking about how Scarlett was nice and comfortable with her mommy and daddy pre-surgery... in her own house, her own crib, nice and happy and secure....then October 12, we completely turned her perfect world upside down and broke her trust.

Everything that was sacred to her... her home, her caregivers, her life...was taken away from her, then to add insult to injury she had horrible things done to her...poking, proding, needle pricks..bandage tape removal, tubes shoved down her throat, a different nurse (caregiver) every day/night. Now that she's home again, she's getting used to having mommy and daddy back, but the second we put her down she screams and cries until we pick her back up again. It's almost like we can't put her down. Even if she's sleeping we can't put her down because she'll wake up the second she leaves our arms. Poor, poor little baby. :(  In her 8-month-old brain, she thinks that if we leave her, we're never coming back. :(

Separation anxiety never even occured to me. It may or may not explain the barfing, but it totally explains her behavior in the past 3 days. Uncontrollable crying for no apparent reason..screaming when we put her down...calming when we pick her up, etc.

Tonight was a much, much, much better night than last night or the night before. Maybe it's a combination of slowly introducing milk back into her diet, or the extra TLC (tender loving care) we're giving her (like not putting her down even when she's calm)...but something has helped and she is sound asleep tonight (on the living room floor sleeping right next to daddy) and doing much better. We've also been able to turn down her oxygen to 1/8 liter from 1/4 liter. We're going to try to wean her slowly off that which will be nice since she's tethered to her oxygen tank (hence sleeping on the living room floor next to the big oxygen tank). Everything in baby steps. But she's slowly on her way to becoming a 'normal' baby.

It's been so long I'm almost starting to forget what it is like to have a 'normal' baby. One without a feeding tube, one without pulse-ox, oxygen, weekly doctor appointments, etc. I will be happy when I can finally be able to take her to the store or to church. Allbeit months from now since it's cold/flu season... I'm just looking forward to some sort of normalcy in our future.


  1. I totally understand what you are saying about normalcy in your life even though we haven't had surgery yet, we are still discouraged from public outings due to the cold/flu/rsv season, we too see dr.'s biweekly. It all sucks, but it is what is best for our babies and that is what we do!! My heartbreaks for Scarlett,but she knows you are there taking care of her every need/want she will be back to "normal" before long!!Then she will be one spoiled and loved baby! I think of you daily!!

    Maccoy's Mommy

  2. Hi, Melodie, I am so sorry to hear how difficult everything has been for all of you and Scarlett. My heart broke too when I read what you wrote about separation anxiety, how hard to hear. So now you're doing the right thing by giving her the extra TLC she needs. I wish I could help. I'm sure once you're able to take her out and get back to normal, it will all be you, take care! Roe

  3. Melodie, I've often wanted to ask you which surgery you thought to be more difficult both for you and Scarlett since you've been through both (one as newborn and older baby). Would love to hear your perspective on this. I just mention this now, because your post reminded me of this, now/older they are more aware. And it is so sad like you mention that her trust has been broken and she fears being left alone. I notice, now just going to cardiology appts. with Alexa she is not so compliant as before, she is shy and pushes things and people hands away. Not looking forward to this when it is our turn. On another note, glad to hear she was physically fine and no additional worries to add to your plate or hers. And it if makes you feel any better I think Alexa went through a faze like Scarlett is going through now around the same age, although I bet Scarlett's is probably magnified because of her recent experience. Hope she continues to feel better and safe soon with all your TLC and being home sweet home again. Take Care ~ Michelle

  4. Oh wanted to add, I think you had asked about my heart mom button, of course you can take it, I made it for all us heart momma's.