Par found his big toe

I hesitate to give the full update on Par for today because realistically it could all change tomorrow morning. When we called this morning we had some good news--Par's bottle feeds were increased to 45cc's every 3 hours and I would exclusively breast feed for 2 of his feeds. But the biggest news was that his NJ tube had been discontinued (wait, don't get too excited yet)--discontinued for a trial period. As long as Par continues to tolerate his bottle and breast feeds, the NJ tube will be removed in the next 24-36 hours. So for right now, he still has the tube going down his nose and throat into his intestines, but it isn't actually being used anymore.

When I arrived, Par was ready for his breakfast and took the bottle like a champ--he didn't even seem to notice the added 5cc's. I can tell we are slowly getting to a full tummy because he seems less and less hungry after his feeds--especially today--he was fat and happy and fell right to sleep after he ate.



He slept through 2pm--and I finally had to wake him up around 2:20 to tell him it was time to nurse--Par's history shows that he doesn't like to be woken up and he never does his best eating in these situations. So, it wasn't the greatest experience for either of us (nothing like yesterday)--basically he latched on quickly and ate for 10 minutes. Then (per the order) I had to take him off and switch him--he did not like this and decided to scream-----loudly-----for ten minutes. Believe it or not, I remained pretty calm--I just felt bad for him. He finally realized I wasn't trying to deprive him and latched on again for about 10 minutes. Then he needed to burp and that was very traumatic because I could tell he had some gas and he couldn't get any relief--poor baby! Crying doesn't help--it just makes it worse--and he cried for about 15 minutes. I finally tried to feed him again and he latched on for about 10 more minutes and fell asleep. Good news, he ate. Bad news, it wasn't very efficient and i feel like he already used the calories he was taking in just by his crying fit.



He took is 5pm bottle without any problem--but then was hungry for a quick snack at 6pm. He then was very upset again--possibly more gas issues--or possibly because he was tired. We left him upset at shift change and grabbed some dinner. When we returned he seemed calmed and quite content. I was nervous about the weigh in--potentially he could have lost weight today--but he actually GAINED weight--our nurse seemed surprised--especially in light of what all went on today and his feeding changes.



I nursed him at 8 (only about 10 minutes)--he was very relaxed and fell asleep--so relaxed that I know he didn't get enough--which normally wouldn't be a big deal, except I don't live at the NICU and I just knew that he would be hungry when he woke up--I felt so guilty for leaving--but I knew he would sleep for a while and his nurse would make the right decision if he woke up hungry.

Rusty just got off the phone with his nurse, he did wake up about 45-hour later and was hungry so she gave him 25cc's of a bottle and he is now sound asleep.

I'm completely ready for this--it is just difficult in the NICU. It is hard to give your baby a snack or just to "see" if he is hungry because it involves finding a big screen so that you can have some privacy and not expose yourself to everyone--then you have to position the pillows just right in the wooden rocking chair--and the pillows and blankets often slide off--and then you can't use them if they've hit the floor--so this entire time there is a crying baby and you still don't even know if he is hungry or what. Anyway, home will be much easier as far as feeding/eating goes.

The nurse practitioner has scheduled a echo cardiogram for Par sometime tomorrow--this is standard for CDH babies when they are nearing the end of their stay (still not getting our hopes up). She has also tried to schedule Par's MRI of his brain for Friday--mandatory for any long term NICU 3 baby before they are discharged.

We continue to praise God for all of Par's steps forward--how great is it that our biggest issue is eating. We thank you Lord for our son's life.

We also continue to pray for Par's friends and their family.
Much Love,
Liz, Rusty & Par

PS- if you are wondering if Par got the shepherd boy part for the Gainesville Living Nativity...well...that would be a "NO"--and we had to put Par in a straight-blanket to contain his rage.