This Heart Broken

Noah watching me give Zoe’s medicine….

“Are you giving Zoe her medicine?”

“Yah”

“Oh, good, she’s all better now”.

I heard from Children’s today and her CMV levels are low enough they feel they can remove her central line.  They’ve contacted the surgeon and are hoping to schedule it on Wednesday!  Her level came back at 540 (originally she was at 700,000) and as long as she stays below 10,000 she will be off the treatment.

Zoe’s clinic appointment on Wednesday went well.  They are now planning to have me come in only one day a week!!!  Yah!  So now I will go in on Wednesdays but the appointments will probably be pretty long.  They called yesterday with her lab results….they are still having to change her main immunosuppressant drug level every week because we can’t seem to get a consistent level in her blood.  They also ran a test to see if she has any infections going on and it came back negative.  Her CMV count has not come back yet but they feel fairly confident that it will be low enough to stop treatment next week.  If that is the case, they will schedule to have her central line removed next Wednesday.  The process is done by the surgeon’s because they placed it but will only require local anesthetic.  I can’t tell you how excited I am….we are constantly worried we (or she) will do something that will pull it out.

On the eating front….she’s eating very well consistently and as long as we can keep her from catching colds/flu bugs she should start to catch up in the weight catagory.

I’ll post the plan for her central line when they call me.

-Jen

We’ve had a few more appointments since I last posted. Everything is looking fine. Zoe gained another 6oz since last Monday! She’s actually grown out of her 0-3month onesies which is encouraging. Her low grade fevers have been gradually going away and so we’re pretty optimistic they don’t mean anything is wrong. Her echos are very gradually improving which shows her new heart is gradually settling in. We’re trying to get some of her meds down/gone (or at least I am). This week we’re going to try cutting her acid reflux medication in half and see how she does (she’s been spitting most of it out anyway). Speaking of spitting medicine out….good grief, it’s like a three-ring circus everytime I give her medicine. She’s a smart girl and finds ways around my creativity so that she doesn’t have to swallow her meds. I don’t need to explain how that is a BIG problem. What works one day doesn’t work the next and then four days later it works again…etc. Not that I blame her..they taste AWFUL!

Starting next week Zoe will get a shot once a month to help prevent RSV (info on RSV can be found at http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm) during cold/flu season.

She’s also started experiencing a side effect of her main immunosuppressant. She now is having some eczema problems and a lot of cradle cap. I’m hoping to find some lotions that will be effective but if not she’ll need to go on a hormone lotion to get it under control.

We took the kids to a pumpkin patch this weekend for some sunshine, fresh air, and October fun. There ended up being a sea of humanity there and so thankfully, Zoe fell asleep and I just kept her covered with a blanket. We’ll post the pictures to our flicker site this week.

Love to you all!

Took Zoe in today and she gained a whopping 6 ounces since last Wednesday!  She now weighs 9lbs 6oz.  They’ve also started her on Magnesium supplement because her levels were very low last week (the medications she’s on can strip Magnesium out of her body).  I’m hoping this is temporary and that the low levels were becuase she was off her multivitamine for about four days.

Zoe also is running low grade fevers again.  I shared that with them at clinic today and so they are running some extra blood tests.  They will then look at her echocardiogram scores from today and the blood test results to see if anything is going on in her body.

Yah!  Zoe gained a little bit of weight over the weekend so they’ve put off putting her nasal tube back in.  As long as she keeps gaining we’re okay.  She’s really done well with her oral eating.  However, I discovered yesterday that if you put too much in a day with her she drops WAY off!  Yesterday we took Noah to the dentist (he actually let them clean his teeth!) while Zoe stayed in the car with her grandma Sue and grandpa Ron then we drove Noah to a friend’s house and then headed up to Children’s for a weight check and blood draw.  THEN with extra precautions we went to UW Hospital to meet her new cousin (Alecia had her baby early Monday morning).   He’s very cute and simply perfect at 8.5lbs. I sometimes forget how small she is… she weighs just a little more than her newborn cousin and she’s 13 weeks old (and still has a pacemaker inside her giving her a little extra weight).  She is growing longer though and she’s getting a lot of strength  now; she holds her head up so well, she’s very alert and smiley and her cry is actually loud where it used to be so weak you couldn’t hear it in the next room.
No more busy days for quite awhile because she can’t afford to take in less for even a day (her clinic visits really mess her up also).  Her meals are our number one priority now.

Her central line still looks good; no infection or clots.
We go in again on Wednesday for another echo, EKG and consult.

We survived our first week home. I won’t bore you with the details but it was a rough one. We don’t have a nanny anymore because Noah just wasn’t really connecting with her so he spent the day at Jen Zug’s house while I was in the hospital.
Zoe had two checkups with echos and her scores came back improved. They also did a blood test to check her CMV score (tells them how active the virus still is) and she dropped to around 70,000 down from 110,000 the week before. If she continues to drop like this then next week she may only have IV medicine once a day instead of twice. My blood test also came back and it appears I have had CMV in the past so it is possible she got it from me as she was being born and it’s also possible she caught it from her donor. They wanted to find out if she possibly got it from me because congenital CMV is easier to treat but carries a greater risk of late onset hearing loss. The audiology clinic at Childrens wants her tested every 3 months for at least 3 years to detect any hearing loss she may experience from this virus. As of right now she’s passing her hearing tests.

At her Wednesday clinic appointment they started talking about putting the feeding tube back in because although she isn’t losing weight she’s also not gaining any. At that point she was taking in just over 400 cc’s a day but their target was 544 cc’s per day. Thursday she jumped to 563 cc’s! Obviously she’s determined to keep that tube out. Her feedings are getting shorter and she’s taking more in each time and snacking less. As long as she keeps this up and weighs more at her Monday checkup the tube will stay out.

That’s all for now!