Eventful Day for both boys!

Jaime's rounds weren't overly interesting today. The drs. were just talking about his feeds. Apparently his sodium and potassium were low...they said that it was due to both being low in my breast milk. Go figure...me and my chronic electrolyte imbalance! They supplemented both of them and fortified the breast milk. Oh, and they found 2 more bins of breast milk yesterday, so he's back to getting my milk exclusively for the time being. Also, he's up to 12 or 13mls an hour on his feeds going up by 1ml to 18mls and his TPN has officially been turned off. Other than the feeding issues, they weaned his O2 down to 4 liters. That's about all for rounds.

After rounds, we picked Jared up from school. He had a hematology appointment with the Hemophilia Treatment Center at Children's Hospital. We talked to lots of people with our appointment lasting 3 1/2 hours. ARGH! Jared wasn't overly happy, but we all liked the staff of the HTC. Jared's hematologist said that we might be able to wean his home IV's based on how he does over the next few weeks. That was AWESOME news...scary, but awesome! He also ordered lots of labs to see where Jared's Factor VIII levels are falling. Jared was a trooper having to get 2 Iv's, one for the blood draw and one for his infusion-the blood draw IV blew half way through the flush before infusing. And he had Jared get an X-ray of his right hip, as one was never done when he had his hip joint bleed before Christmas. He's sure at this point it will be fine, but he still wanted to do it just to make sure that there is no hidden pocket of blood in the joint at all.

So, after our 3 1/2 hour long appointment, we went to see Jaime. His nurse said that they had a little incident with Jaime. I was immediately horrified. She told us that Jaime was desatting and got down to 62%, they couldn't figure out why and his nasal canula was just fine. Turns out there was a minor issue with the high flow tubing. The drs. do have the babies on O2 take a room air challenge at some point. Today they joked about using Jaime's room air incident as his room air challenge. Obviously he failed! Good to know, though!
Prior to the O2 incident, he threw up a lot of his milk. The nurse had just checked his tummy and said that he was retaining a lot of milk. By checking his tummy, they have to pull what's in his stomach from his tube with a syringe, measure it, then they push whatever fluid they found back into his tummy. It's totally gross to me, but it must be done to monitor his digestion. So, they don't know if that was the cause of him throwing up or not. By the time we went were there, he was just fine. Jared and I both held him for a little bit before leaving to get dinner.

So, that's our day. Always an exciting time at Ciny Children's! :-)

In other CDH news, we are still awaiting the arrival of Baby Gia. Mom's at Good Sam's being induced as we speak. Jaime's buddy, Carter is feeling much better than a few days ago, Mom and dad even got to hold him a few times! There are two other CDH babes in the RCNIC who are having a few rough days, Carter who is in Carter's pod and another little girl in Jaime's "gated community" (AKA isolation).
Please pray for all of Jaime's Cincy CDH friends and their families, as well as all families affected by CDH.

Finally, please add a special prayer for Tom's Grandma Janet Fields who broke her elbow on Friday and had surgery Saturday. From what we hear, she seems to be doing as good as to be expected.

As always, we thank you for your all of your thoughts an prayers,

Love,
Sheryl

P.S. Today's photos show you how Jaime was STILL trying to pull his tubes yesterday and how we remedied that for a moment today-by putting his giraffe rattle in the way. LOL! Enjoy!!!