One Step Forward...

Two steps back.  That's what I'm feeling these days.  Aaron was supposed to be ready to come home at the end of this week, now he's not...William will be ready as soon as his apnea spells end, but there's no end in sight.

This morning started out rough with a call from the nurse that William had not one, not a couple, but EIGHT significant spells last night.  They stopped his feeds for the day and took blood cultures to test for infection, suspecting a UTI.  So far, everything is negative.  The rest of his day has been good, though.  I had just talked to the doctor yesterday about what we needed to do to wean his oxygen down to send him home soon (on oxygen and the apnea monitor), but this is going to hold him back a bit.  He can't come home and just stop breathing.  He is where he needs to be right now, and they are taking great care of him, I just wish he would get better.  He will outgrow the apnea - it's just a matter of when.  I did appreciate that the nurse called us tonight when her shift ended to let us know that she had restarted his feeds, and that the rest of his day was uneventful.  The chunky monkey needs to eat :)

Aaron's bloodwork related to his liver is looking better so far.  He is on extra vitamins and oil to help gain weight better, which seems to be helping.  A few days ago, it looked like the boys would be coming home together soon.  Now, I again think that Aaron is going to come home first, but I'm not sure when.  As we've learned, this could change.  For my own sanity, I need to stop thinking about homecoming until it's real.  I've had my hopes up for a bit, with good reason, that they'd be home a few weeks earlier than their due date.  I need to go back to the one day at a time mentality and appreciate the daily gains.  They'll be home when they're supposed to be home.


Sleeping Baby Pictures

William

Aaron

Aaron & William

William

Aaron  & William

Big Sister!



Insert title here

Today was a good day for both of the boys.  Aaron's liver is stable, and the vitamin K shot seems to have helped his clotting ability.  William's oxygen levels are being weaned down to decrease the amount of flow and get him to the point where he can come home with an oxygen tank.  The last doctor had taken him off of the Prevacid, but this one is putting him back on it because of his spells yesterday.  His apnea spells are likely due to reflux, and the medicince should help to manage the associated pain.  He also passed his hearing test today.  Aaron will be tested when he is back out of the isolette.  We're not worried about Aaron's hearing, as he startles easily to any noise.

Today was a good day for mommy as well.  I stayed late at the hospital this evening in order to have more time with the boys, as the visitations over the holiday weekend felt rushed.  It's nice to see them in a more awake state - they're usually in full nap mode for the afternoon feeds while I'm there.  They're starting to make more and more little baby noises, which is also fun.  I know I need to post more pictures, I'll work on that tomorrow :)

10 Weeks!

Weight Check
William - 4lbs 6.8 oz
Aaron - 4lbs (Finally!)


We're starting to get a bit antsy to get the boys home. William's spells continue, but are decreasing...hopefully they will decrease to a complete stop SOON. Aaron's liver functioning is still in question, and his weight gain has plateaued...hopefully he gets it back together SOON. We can see the light at the end of the tunnel but just can't get there fast enough.

Aaron's liver issues are likely attributable to the CMV virus. The virus will run its course and usually shows no symptoms for healthy individuals. He received a shot of vitamin K yesterday to see if his decreased clotting ability was due to decreased liver functioning or lack of vitamin K - we don't know the results yet, but hope it was just a vitamin deficiency. His potassium levels were up today, which is a good sign. There's no proven treatment for the CMV virus, but he would be treated with an antiviral IV drug if his liver functioning gets to a certain point (We're NOT at this point, and hopefully won't get there). The drug is a 6 week IV course - I was afraid at first that he would need to stay in the hospital for this, but the doctor said it should not change his discharge date (whenever that may be). He would be able to come home with an IV, and a home care nurse would visit to change/check it.

William's liver functioning is getting better, but the doctor is still trying to figure out what's causing his issues if he doesn't have the CMV virus like Aaron. This is where we strongly disagree with the doctors. I've expressed my concern but apparently don't have any power over this. In our opinion, they just need to retest him for the virus - it's a simple urine test. He could have it but not have shed any in his urine for the last test. If Aaron has it and they're showing similar symptoms at the same time, it's highly likely that William has it too. Instead, they are poking and pricking him for more and more blood in order to test for every virus/disease under the sun that would impact the liver - conditions that would have to come from me, or from the blood transfusions. I KNOW I don't have any of it, and the likelihood that he'd get them from well screened blood is less than minimal. If these tests turn out negative, and they will, THEN they'll go back and re-test him for CMV. Completely backwards. We're also not super happy that they had been pushing his testicles back up and out of the scrotum for a month. Poor little guy :(

So, while we know they're getting great care at the hospital...they'll get better care with us. They really just need love right now. Please keep the prayers up for both of them to be healthy enough to come home soon!