Day 8: Some progress, some new information, some poop

I know that technically Liviana is a week old today but I still consider this her 8th day since she was born only 54 minutes into the 18th. Some may say, Day 7 but I say Day 8 and as the haggered mother I hope nobody will be bothered by my counting.

Some Progress: After a very rough couple of days Liviana is starting to do a little better. They ended up adding Nitric Oxide in addition to the high frequency vent after her pulmonary pressures came back way too high at 70 following an echocardiogram. Following the introduction of the Nitric her pulmonary pressures went down to 38, which is great. it is doing just what it needed to do.

Her MAPP, which is the oxygen pressure she is getting is getting weaned quite a bit. She is down to 15 on her pressure and currently 38 on her oxygen percentage. Her blood gases have been great so they are able to move forward on her weaning progress as long as her Sats maintain (the oxygen saturation in her blood).

Liviana was running a fever of 101.6 a little over 24 hours post-op. They were unable to pinpoint the source of the fever so they called in Infectious Disease docs to rule out something viral. Her temp has since returned to normal but they are still wanting to make sure they have all of their bases covered. I know that both Aria and Miles have run temps when they were teething (although some docs swear that is not possible) so it would seem quite possible to me that her temp could have been the result of having major organs in her body relocated.....I'm not a doctor though.

Some New Information: It was discovered on the echocardiogram yesterday that Liviana has a Ventricular Septal Defect (VSD) in her heart. It is very small, which is why it was not discovered before, and both docs (the surgeon and neonatologist) have said that they usually close themselves within the first 6-months to a year. In addition, she has what is called a Hemivertebrae, where she has some abnormalities in her vertebae, estimated to be around T3-T5. The CDH, combined with the VSD and the Hemivertebrae is pointing to this being a the cause of a genetic disorder. We will eventually be talking with the geneticist in the next few days/weeks to help address this issue.

I have been assured that the VSD and vertebrae issue are not huge concerns but it is still hard to not worry horribly about our daughter's future health as it relates to the CDH and these additional concerns.

Some Poop: I was talking to Dr. M. yesterday afternoon and asked him at what point could we expect to see some bowel activity so we would know that it was working properly since the "move". He said he would not expect anything for 3-5 days so I should not be concerned at this point. It was no more than 5 minutes later, as they were getting ready to x-ray Liviana and were changing her diaper that she left a nice, big, mess for the nurses. They loudly announced, "We have Poop". I was so excited. She continued to poop even more on the blanket she was laying on as they were trying to change her. It was a magical moment and I know the CDH parents out there know exactly what I mean :).

I think that is all of the updates for now. As I have been here typing I heard them call the Respiratory Therapist to come lower the settings again for Liviana, as her blood gases are great again. I am eagerly waiting to see what she is graduating to this time.

Please keep her in your prayers. The doctor told me yesterday he would not say she is in the clear yet but she is making progress in the right direction. I told him to me, she is not in the clear until I take her home with me.

Please keep Little Ned,who is scheduled for his repair surgery today or tomorrow. You can follow their progress on the link at the side for Baby Dellinger. Also, please check our Cadenne's blog. She has moved to a new hospital and is making the lovely progress of going home soon.

Thank you all for your support and caring.
Amy