u/Extreme-Ad7423

My baby girl is adjusted 4 month old. 10 days post-op, every feeding when baby is awake is a battle. We offer the bottle and she drinks a bit then she would smile, babbles and pushes the bottle out. This goes on for a few times until she is tired/frustrated and throws a big tantrum and cry so hard. She would only eat well when drowsy and sleeps. She did have swallow difficulty and we were on thickened feed before the surgery. Post-op by discharge from CICU they did a swallow test and said she can do thin milk with dr Brown #2. Maybe she is still adjusting? Is it pain? Can I keep giving her Tylenol after 10 days out of surgery? Appreciate any suggestions. I think I have PTSD from feeding my baby😔

This is just to share my experiences and may be get some wisdom regarding this issue.

I’m immensely grateful that my baby had a successful VSD repair procedure on Monday. I was worried and anxious sick before sending her to the OR but the procedure was going exactly as planned and she is making good progress in recovery. Tomorrow Friday we will be discharged.

I have heard many inspiring stories about babies feeding significantly better right after surgery and even gained some weight during their hospital stay. Well, this is not the case for us. She was on thickened fortified feed at home and can take 100ml per feeding when she was hungry and in good spirit. By the Monday evening she was so hungry out of surgery they gave her 60ml clear liquid and she took them in no time. I was so happy. But then the following days when we gave her thickened breast milk she was pretty distracted and not interested in eating. The best she did was 70ml and it took a long time. Today she had her chest tube out, feeding is slightly better but she is still not eating as well as before. Her medical team is pretty positive it will get better and we will patiently wait for that.

I’m putting it here in case someone had similar experiences or for future parents who may face the similar situation.

Baby girl was born premature at 32 weeks at 1400g. A VSD of 7mm was found at echo after heart murmur and was told to have surgery at 4-6 months of life over 5 kg. At that time it felt like an impossible goal. Well she spent 80+ days in NICU fighting feeding difficulty, poor weight gain, all the prematur and VSD symptoms. The last echo however showed that VSD was getting smaller, she was finally complete all feeding by mouth and was finally discharged.
I hope for a miracle that her VSD can close on her own. Well she is doing great at home she is still on medicine(lasix) and weight gain is marginally ok when her feeding is fortified to 28kcal today we learn at her cardiologist appointment that she would still have her VSD surgery as scheduled in a month. Fortunately it is going as we planned. She will be 6 months old by then and over 5kg.
I guess I just need some solidarity from this group. Many of you have been through similar journey. How does VSD surgery look like for your LO? How do you mentally and physically prepare for the surgery? What is the recovery for your LO? I know deep down it would be the best decision for her to have a heart that can fully support her growth, but I’m still very anxious and i really wish I could bear the pain and suffering for her.