We are all still alive. In a zombie-like state due to a strict every-three-hours eating schedule, but alive.
The day we were discharged (a week and a day ago – wow!), we got the results for diGeorge syndrome. Kiran does not have it. This was a huge relief, as it had been weighing heavily on my mind. This dude has enough challenges in his life, and we are so thankful this wasn’t added to it.
We did come home without the NG tube, but we also had to both show we could insert it in case we ended up needing one. We opted to put one in the next day, as he was leaving a few ml behind in every bottle and they were starting to add up. Despite eating every three hours and being sure to get in the full amount, K did lose an ounce and a half from Mon to Wed this week. We have now upped the amount we give him eight times a day. I have some concerns regarding the NG tube – it seems we are moving backwards with our progress. Where he was regularly taking by mouth full bottles at the hospital, we are finding as each day passes, we are having to sometimes put more and more down the tube. He does still sometimes finish bottles, but other times he’s too fussy/gassy/tired and eating becomes too big a chore. Hoping we get some good guidance on this from both cardiology teams today and tomorrow (Iowa City and Des Moines).
Otherwise, dealing with all the regular new mom worries on top of all the novel heart mom worries. We have a pulse Oximeter we hook him up to a few times a day and let run all night while he is sleeping – this tells us his oxygen saturation levels and heart rate. Once these numbers start creeping downward, he will be telling us it is time to plan for surgery. I am so glad we are continuing to see upper 80s/low 90s regularly – I dread the day these numbers go down.
I am exhausted and overwhelmed and highly emotional. I am fairly certain I cry every day, at least twice. I am told this is normal and may still be at least partially hormonal. I do not know what I would do without the help of my husband and my parents.
Despite all the worries and uncertainty, and despite the rigorous feed-change diaper-pump schedule, I try to remember to enjoy this time as much as I can. I know we are in survival mode, and it is HARD. But I also remind myself how lucky we are to be home dealing with this hard, rather than in the hospital, dealing with surgery and recovery hard. Though that hard will come, too, in time.
We really feel all the prayers and thoughts have done wonders for our family. Please keep them coming. I am also so thankful for all of you who have reached out with encouragement and love. Please keep that coming too!