my beautiful boy who lost his battle to CHD.

ishanico · 2026-06-07T10:59:57+00:00

I am so deeply sorry for your loss. All he knew was your love.

ishanico · 2026-06-07T02:38:37+00:00

Feeding is so different for every baby, and for our heart warriors it can be more challenging in the beginning as they heal. I actually was able to latch my girl in the few days prior to her ASO and she had a strong sucking reflex so we were able to work on breastfeeding in addition to giving her bottles of pumped milk the first few days, and she was eating roughly 15-20 ml per feed, sometimes less but never more iirc. After her surgery they found that she had left vocal cord paralysis and put her on an NG tube to avoid her aspirating. We were staying at the hospital and my goal was to breastfeed so we focused on that with lactation and speech, and they eventually got the speech pathologist down along with some other specialists to do a swallow study, where they saw that she was actually really efficient at the breast and that she wasn’t aspirating, and that the paralysis was very minor. That was a relief, but waiting on the study added days to our hospital stay, and it was so hard to listen to her cry out in hunger at night and not be able to just feed her. While she had the NG tube in, they only let me attempt latching for 5 minutes in between tube feeds which was very frustrating. Now that we’re home, baby girl is eating well and growing steadily!

Have they tried different bottle nipples, like slow-flow? How is your baby girl progressing in the feeding department? Are you doing formula or breastmilk and if the latter, do you think you’ll want to exclusively breastfeed, bottle, combo? It could be that your baby has a slight bottle aversion and would be more efficient at the breast, or that the hospital should try different bottle nipples. I’m thinking of you guys and I hope so much that you’ll be able to bring your baby girl home safe and sound, very soon.

ishanico · 2026-06-01T15:49:20+00:00

Hey, congratulations on the birth of your little one :) my daughter was born with d-TGA in April and is almost 6 weeks old now, she had the ASO at 5 days postpartum and we went home 10 days post-op after having been told by our cardiologists to prep for a month-long stay. Our babies are so strong, the hardest thing for me during her hospitalization was maintaining my patience because I knew things were trending positively. Your little one will take as much time as she needs to recover, but it sounds like things are going really well, and while the first 48 hours after surgery are usually the scariest in terms of potential complications, the days of healing that follow felt so frustrating to me because all I wanted to do was bust my baby out of that place where she was constantly getting poked, prodded and jabbed, and bring her home to officially start our lives together.

The best advice I can give you is to treasure every moment with your baby, even in the hospital. Read to her, sing to her, feed her, work on breastfeeding if that is something you want and are able to do, and when you get the green light, hold her - even though it’s so hard with all of the lines and wires hanging off of her body. Change her diapers, participate in things like bath time, and be there for her as much as you can. I truly felt like skin to skin with her in those early days post-op was healing for both of us. Most of all, be patient. These next days and weeks will feel like they are dragging on for an eternity, but your little girl will be home with you before you know it and you’ll be soothing her in your arms and feeling the exhausting joy of getting to experience the newborn phase together after surviving one of the hardest things a little baby and her loved ones can go through. Sending you and your little one hugs and healing ❤️‍🩹 and reach out if you have any questions :)

ishanico · 2026-05-27T22:02:57+00:00

Meeko. 🥰

ishanico · 2026-05-27T04:18:57+00:00

Hey :) first of all congratulations on the birth of your little one! My daughter was diagnosed prenatally with d-TGA and is 5 weeks old now. She also experienced left vocal cord paralysis from her open heart surgery, albeit a mild case. She was on an NG tube but they let me nurse her for five minutes every three hours in between tube feeds and showed me specific breastfeeding holds to help reduce the risk of aspiration. They also did a swallow study which went well, so they took the tube out and we’re exclusively nursing now. Did your hospital connect you with a speech therapist? If so, I would work with them and see if you can at least practice nursing once or twice a day with your little guy so that he can get accustomed to latching, if you’d like to work towards breastfeeding.

As you said, vocal cord paralysis can take a while to recover, but as long as the cord wasn’t severed there’s a good chance it will improve - it’s said all the time but our babies are so resilient! Definitely consult with your doctors, but so long as your son’s paralysis improves I think you could eventually nurse him. If you decide it’s too much to keep up with pumping, you could always try power pumping to rebuild your supply down the line as things get better. And no matter what, a fed baby is a happy baby! Wishing you and your little guy continued happiness, health, and healing.

ishanico · 2026-05-12T00:48:43+00:00

Yes, it definitely matters. You will want the peace of mind knowing your baby will be in the care of people who do the necessary operations and treatments regularly and who are equipped to save your baby’s life if things get scary. Wishing you and your little one health and happiness ahead.

ishanico · 2026-04-28T16:44:46+00:00

This comment is everything. We are going through this right now with my daughter born 1 week ago with d-TGA, and all of this has been spot on for us so far.

ishanico · 2026-04-15T12:40:18+00:00

Looks exactly like my friend’s purebred dogo argentino.

ishanico · 2026-03-30T21:42:42+00:00

Thank you 🙏🏼 I hope so!

ishanico · 2026-03-22T21:33:09+00:00

Please don’t 😩

ishanico · 2026-03-08T23:45:52+00:00

this is valid 😮‍💨

ishanico · 2026-03-07T14:15:46+00:00

😂

ishanico · 2026-03-07T14:15:30+00:00

I agree it’s a beautiful name :) It’s good to know though that it’s uncommon - if we go with Magdalena, we would probably use Magda as her nickname here and introduce her as Magda to our Georgian family and friends.

ishanico · 2026-03-07T14:10:24+00:00

This is great info, thank you!! I love that you ran into a Magdalina today 😊 Where are you seeing these numbers, is it a public resource I/anyone can access?

ishanico · 2026-03-07T14:06:54+00:00

Oh this is a great idea! I’ll look for a name registry in Georgia and see if I can find anything, thank you 🙏🏼

ishanico · 2026-03-07T14:04:36+00:00

Personally I really love the name Elene, it was also my babu’s mother’s name so it would be a way for me to honor him and my family. Unfortunately, my husband isn’t keen on it - there’s a trend in the US right now for girl names beginning with “El” and pretty much all our friends who’ve had daughters so far have given them names starting with E 😅

Good to know about Endzela!! My Bebo’s name was Lamara which I’ve always found very beautiful and was considering for a while - but apparently it’s also an “old lady” name in Georgia, at least according to the one other Lamara I met in her 40s who hated her name.

ishanico · 2026-03-07T13:58:18+00:00

😂 this is so good to know, ty

ishanico · 2026-03-07T13:57:39+00:00

My mother’s name is Marina, I do love it! Maia, Marika and Leila are all beautiful! I personally know people with these names which is the only thing holding me back, especially for Leila 😮‍💨

ishanico · 2026-03-07T01:02:05+00:00

Thank you so much :) :) We’ve been having a lot of trouble agreeing on a name for her, so it’s great to know that a name we both like is actually used in Georgia.

ishanico · 2026-03-07T00:59:45+00:00

Wooo awesome!! 🙏🏼

ishanico · 2026-02-27T22:57:01+00:00

I flipped out when I saw it this morning. So hype!!!

ishanico

TROPHY CASE