Sophia giggles on going home day!

Sophia woke up Saturday intermittently fussing in her bed and when I went to pick her up she gave me a huge smile and giggled repeatedly! It was so great to hear her finally giggle–and there couldn’t have been a better day for it! She is definitely into her attachment phase, fussing on the floor when she can’t see you and smiling big when she gets picked up. She wants to be sure we are nearby at all times. Let’s hope she soon learns that we will always come back.

She got rid of the diarrhea Friday night, but by early Saturday was constipated. The hospital didn’t have pear juice, so I gave her prune juice for the first time. As it turns out, she didn’t need the two separate doses I gave her since we were quickly back to the diarrhea. She also developed a little rash at the waist line of her diaper. The doc said it didn’t look like a food allergy, just a contact irritation. The nurse said kids can suddenly develop allergies to certain brands of diapers, but it seems to have gone away with a little hydrocortisone cream. Luckily it didn’t delay our escape from the hospital.

We were discharged with specific follow-up instructions: we have home health giving her another shot for RSV protection on Monday since she lost antibodies with the blood she got (and of course checking her blood pressure, weight, heart rate, and breathing). They are to come once or twice a week for the first three weeks. We also have an appointment to see our pediatrician on Friday and to see the cardiologist in two weeks. Sophia now has a blood pressure med (Captopril), but no longer has her heart medicine (Digoxin) nor the sodium supplement. We’ll find out whether cardiology still wants us to fortify her food to have additional calories (26 calories per oz instead of the standard 20). Now that her heart is working better, she probably won’t need it, but from a GI perspective it is nice to give her less volume. On that front, she has been doing fabulously. We were warned that things could really go down hill, but she is up to eating full volume on our home routine and hasn’t been spitting up! I hope I’m not jinxing things by mentioning that, but it has been really wonderful. She hasn’t been coughing as much either, which is really great since it is so painful with her incision. The only issue is that she has developed painful gas, so we’ll see if that works itself out or not (we’ve been giving her gas drops). Sophia has also developed a circulation issue where her extremities are cold when her core body temperature is even a little warm. I don’t understand why she has this now that her heart is fixed, but hopefully it will also resolve itself. For the time being, we’re dressing her in two pairs of socks, and I’m considering adding the cute little green polka dot leg warmers she has.

She’s been in really good spirits since coming home, of course she is still medicated, but it seems like this heart repair has been really good for her. She also seems really grateful to be able to sleep through the night without anyone squeezing her arm for a blood pressure reading, taking a rectal temp, or pumps beeping. She has also been enjoying just laying and looking at her hand in some peace and quiet. She does have lots of energy, though, and is really squirmy. She was already rolling over onto her stomach on Sunday. The nurse practitioner said it was okay whenever she did it voluntarily. Sometimes she fusses a little, so we help her roll back over. She wants to be able to crawl so badly, putting her tiny hiney way up in the air.

Mukwa is happy to have everyone home. When Sophia wakes up crying in bed (probably because no one is right next to her), Mukwa runs up the stairs, jumps on the bed, and peeks over the crib to check on her. It’s good to have someone keeping us on our toes.


  1. I am glad to hear that things are getting back to normal at home.
    We are looking forward to seeing the three of you soon.

  2. Yeah another girl to dress. Yeah!

  3. Cousin Stacy says:

    Howdy! I love hearing that Sophia has been in good spirits since arriving home. Sounds like the little trooper is doing great and happy to be back home with her wonderful parents.

    Can’t wait to see the leg warmers!!!
    Love, Stacy

  4. Cousin Stacy says:

    Erin, sorry to hear about your internet problem this weekend. HA ! HA ! My plan worked beautifully .
    Glad to see you got the problem fixed.

    Welcome back. : )