Good morning happy baby -- second day after RA line removed
Getting a bath. Hey, stop doing that!
Bath time. He doesn't seem to mind it so much.
Last night, Martin had a tiny amount of blood in his stool (dirty diaper). Early this morning, he also had some blood in his stool. They have already done two x-rays and there is something that looks questionable to them. It's too hard to say definitively at this point but they are treating this as a mild or early form of necrotizing enterocolitis (NEC) -- the number one problem for recovering HLHS babies. There is no "cure" for NEC -- their only option would be to surgically remove the part of the gut that is dead. But this can be fatal if they don't catch it early enough. So, even though they're not 100% sure, they are erring on the side of safety and will treat him as if it is NEC. They have therefore stopped all feeds for at least 48 hours and have him back on some drip medicines -- milrinone to help with blood flow to ensure he's getting adequate blood to his gut, lasix to help reduce some swelling and liquid build-up they are detecting in his lungs, antibiotics to help with any infections, and they have increased his oxygen through his nasal cannula as his oxygen saturation seemed on the low side this morning.
Just when we thought we were on a solid footing to full recovery, we have had the wind taken out of us with this setback. It means Martin will be very hungry today and tomorrow. It means we may be longer here in the hospital. It means our children will be without us longer. And if this truly is NEC, it could be even worse than we want to think at the moment. We hope you will remember to pray that Baby Martin gets through the next 48 hours without any more bloody stools and without a trace of anything suspicious on his x-rays. That would be the singular prayer request for now. Thank you.
Update 1:40pm: Another HLHS mom and her son contacted us and encouraged us with their prayers and with this verse from Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest." Her son, Andrew, is an HLHS survivor and is now 11 years old. There is hope!
Update 5:00pm: We just learned that another HLHS baby passed away here in the PCICU at MUSC just hours ago. It's a sobering reality that this is such a sad and serious condition for these babies. The families of this little one are still in the PCICU. You can read their story here. A sad day here at MUSC.
Martin is so adorable and definitely looks more peaceful and happy. Will sincerely be praying that the complication is not NEC, or if it is, it can be mild and treated in a way that he responds positively to. The Lord, thy God, in the midst of thee is mighty!