Sleep!

Well these sleepless nights and spending lots of time awake during the day being fussy has finally caught up with Zoey.  She slept really well all of last night aside from when the nurse woke her and she has been sleeping pretty much all day.  It's probably a combination of this infection at her incision site, all the vaccinations she got throughout the week making her sleepless and cranky, and possibly a growth spurt.  But it's nice to see her getting caught up on sleep and relaxing.  We've had LOTS of snuggle time today (and this weekend) since she's been wanting to try oral feeds or just to be held.

Zoey was sporting a Mohawk today since the T-hawks had their first game today.  She wanted to look like a tough cheerleader despite not being able to attend.  Our lack of attendance was ok though since we had lots of visitors.  First Jesse, Janine, and Kaden came to see her and then Niki and Justin (friends from high school) came with her parents, Ed and Margaret.  Zoey slept through most of the visits but it was nice for them to see her out of the isolette and without any tubes hanging on or around her face.

Zoey and I will cuddle a little more tonight before I have to go back to RMH to crash for the night.  Wishing this weekend won't end!
 

NO MORE TPN!

Zoey can rest peacefully today knowing that she's finally off her TPN!  YAY!  They only have a few more increases on her food level before taking her off all her supplements.  But the TPN is gone and they only have a sugar/water mix going in her iv line now for 12-18 more hours.

We also had a not so hot experience last night when trying to have her attempt an oral feed.  But we tried again today when she was calm, awake, and sucking on her pacifier and SUCCESS!  This feels like a huge weight off my shoulders because the first real feed is out of the way.  Now we just work on increasing those throughout the day.  When she reaches her full feed level tomorrow, they will begin to transition from continuous feeds to every 2 hours, then every 3 hours.  Oral feeds should really take off during this time because this little peanut seems to not like being hungry from being on continuous feeds for so long so she gets really eager to feed.

We started some antibiotics today because her incision site from last week is starting to look a bit angry and swollen.  After two doses this seems to be looking a little less red so that's good.  We pray it's not the MRSA that got into her since that could be very serious.  Hopefully it will take care of whatever is festering in there.  This also seemed to lower her heart rate some from the beginning of the day to the end so that seems to show that it's working.  She also had her whole series of immunizations this week so that was probably contributing to her crankiness and elevated heart rates.  I'm happy with where things have been going and am hoping to see more progress in the right direction through the week.

Aside from being thankful for the progress Zoey is making, I'm also thankful for the gorgeous weather today. I walked to the hospital this morning without a coat and told Zoey this was the kind of weather I've been waiting for and we'd be taking lots of walks when she comes home!  My parents came to visit today and said the same thing!  They loved looking at her for the first time without anything on her face and she was pretty comedic today.  I can't wait til she's older if she's already this funny now!

Quick update

Just a few things in a quick update.  Zoey continues gaining weight.  Yesterday, Tuesday, every separate team of Drs that work with Zoey said she can have the green light to advance on feeds since she's tolerating them.  Boy...you can hear that girl working on moving things through her system at times.  The resident was even laughing at her making faces, turning all red, and the faces she made at us laughing at her then.  They love how comedic she is.  Anyhow, back to the real info. 

They did more testing on the liver biopsy sample and those tests have also all come back negative on top of what they already tested for.  This is awesome news!  Doesn't mean something can't come up later with her liver but they're feeling more and more that her liver issues should clear up with time and growth once she's off the TPN.  Her bilirubin number was also down quite a bit despite her TPN being so high for almost a week now.  This is great since they haven't done anything new to try and get that to lower than what they've been doing.  All of her lab work also came back looking great!

They also have given us the go ahead to start oral feeds when she wants.  So instead of just practicing on that, we can actually try for the purpose of feeding now.  This will be a great time to start that too because she's acting like she's starving and can't get enough food so I think she'll be eager to try.  That's all for now...more to come when we have it.

Liver biopsy results and there's nothing extra in or on my face anymore!

YAY!  You can see my whole face now!  We had a few positive changes today.  They took the replogle tube out of her nose which they were using to suction gunk out of her lungs and airway post-surgery from being intubated and loaded with fluids.  So now she has no more tubes or anything hanging on or out of her face!  First time since birth I think!! 

She also had poopy diapers all night which means her bowels have woke up much more than they were yesterday.  As a result, they started feeding her 1ml of milk per hour to start her out real slow and make sure there are no complications or intolerances.  They still have the TPN running to keep her up on calories in the meantime.  Last night, she weighed in at 5lb, 11oz.  They think most of her fluid retention has gone down so far so this is getting close to her accurate weight since they've been pumping in the TPN at a higher caloric rate since last Wednesday.  She's starting to look and act like a full term baby more and more all the time.  This also includes wanting to eat since she hasn't had milk since last Wednesday and she's apparently become more vocal and fussy which is very uncharacteristic of her.  The nurses got some Tylenol back on board in case she was in any discomfort since it also coincided with her cares and cleaning around the G-tube.  But they also noticed her settle in more after the milk started again so they think she was very hungry and eager to eat.  This will be a very good thing when it comes time to feed and gain weight to be able to go home.


The best news of the day is that the results of the liver biopsy came back, and in a short answer, they don't think she'll have any long term issues nor do they think she has any serious issues with her liver.  They feel that Zoey will be able to "grow out of" the current issues caused by the excessive TPN after getting off it and growing more.  They will continue to follow up with her after we go home to make sure they catch anything sooner than later if it looks like it's going to become a bigger issue.

Although the picture is a little dark, the nurses seem to think Zoey's pretty awesome since they are making more and more of these types of signs when they organize her room or write on the care cards.  Today under name they wrote "Princess Zoey."  This is how her bath supplies are labeled too for her "spa days" and her care card (which is what the nurse's make daily notes of anything major for the day) said "I am SO cute and I know it!"  It seems that she has a few fans there. :-D  These are also the nurses that love to cuddle her when we can't be there and make sure she still is feeling the love so we feel fortunate for that as well!

Sunday update

Zoey's had a good few days for the most part.  Her wound site is healing well and the surgeon's are overall okay with everything.  She still has the large tube down her throat for suction of the tummy, as the intestines haven't quite woke up yet, which is still to be expected. She had a little smear this morning so that's progress.  Hopefully in the next day her bowels get going and she can start feeding and start growing like a normal baby for once and hopefully have the weight gain with it.  She's progressively gotten better from being off the anesthetic and the discomfort and the certain pain from the surgery.  I have to head back to Eau Claire tonight for practice, day 103 of us not bringing back Zoey to our home, going to be a long month or so.

Surgery day was a success!

Zoey said,"Woohooo!!" when she heard she was getting put back together!  Zoey had a HUGE surgery day and everything was successful!  From start to finish, she had a jejunostomy take down (a.k.a. her intestines were sewn back together), they flushed her gallbladder and did a cholangiogram (flushed out the sludge and put a contrast through it to see if the bile ducts were working right), they took a liver biopsy, they removed her appendix, they inserted a G-tube (tube in her stomach for feeding), placed a port for drainage from her incision sight as it heals to let any infection out, and then closed her back up.  She was put under and intubated for the whole process.  She is still intubated now since they have her on a pretty good dose of fentanyl (pain meds) that are running on a continuous drip at least over night.  Once they feel she's not in pain, they'll lower her fentanyl dose, and extubate her again since the fentanyl makes her too sleepy to breathe on her own.  My parents came to sit with us through the process so besides all the support we had from the rest of our friends and family, it was appreciated that they were able to be there in person for extra support.  We've anxiously awaited this day since Feb 1st when they took her bowels apart as part of her first surgery, but despite that, we were a very different anxious today.  Tonight we can breathe a sigh of relief and we couldn't have asked for a better end result and a more successful day.  The surgeon said everything went very well and that it went about as normal as one can expect.

They will let her bowels heal up and wait for them to "wake up" again since they just stop moving and working for a while after being operated on.  Once the "waking up" happens, they'll start working on feeding again and doing the transition of lowering the tpn while increasing the milk.  The Fellow knows our goal is to get her home by my birthday (May 19) and today he said that was possible and I think he'll help us work for that...but only if Zoey decides that's how things are going to go of course.

Just before we left for dinner and the nurses had gotten her all situated in her bed after surgery, I walked in and she opened her eyes some and just stared into mine as if to tell me she was ok and was going to rest through the night but would be fine.  This gave me an incredible sense of calm and I told her I was proud of her and she's one tough little cookie and just to rest and take it easy through the night because she deserved it.

Thank you to everyone for your thoughts and prayers throughout all of this but especially on her big surgery days.  Being her fourth surgery, we hope it's her last.  We also hope this will be the last big hurdle we have to make it through before taking her home.  Lots of prayers for quick healing now!

Today was your due date but after a roller coaster ride, we got good news!

The last 24 hours has been quite a roller coaster ride!  For those of you who were on that roller coaster with us...thanks for jumping in, buckling up, and hanging on.  This is precisely why we haven't told most of our audience her tentative surgery date because that has changed 3 times in the recent past.  Zoey was originally scheduled for surgery on April 23, and was moved to April 18th after a lot of weight gain in a short amount of time.  Then they had to take the central line out so she started losing weight while working on increasing her feeds.  She lost so much weight so yesterday morning the surgeon said he's 95% sure he won't take her into surgery Thursday because she's too little again.  Which started the roller coaster ride.

We were in a crunch to find something to help Zoey gain weight so we could hopefully get her in for surgery on the 23rd still because if it wasn't then, we'd be into May since the surgeon is out the last week in April in Russia...hence the push for her to make weight by the 23rd.  So after LOTS of discussion between the Fellow (someone studying to be a Neonatologist) and Ray, they decided to put her under, intubate her, and have a radiology team(since it's guided by x-ray) place a catheter into her neck and down into her heart so they can give her an even higher dose of tpn with even more lipids and sugars and calories to help her plump up again.  Crazy as it seems, and I didn't really believe it yesterday either, but this was the least invasive and best option they had at this point based on our hopeful "deadline."  Ray started this whole conversation and process while he was at work, then passed it on to me and needed us to decide what to do while I was at work, and then he left work to be with her through all of it.  We both cried many times yesterday and I did what I could to hold things together while at work the rest of the day.  Sorry for those of you I also made cry in the process but thanks for the shoulder to cry on. :-)  Zoey, as usual, went through it all like our little ROCK STAR and handled extubation well at the end.  She was very out of it last night and still seemed like she was sedated when I got here at 9pm.  They had given her Tylenol for any discomfort and they said it seemed to be helping.  I was flooded with emotions, mostly because we've been here 14 weeks, and I felt terrible that she was having to go through yet another procedure.  We just hate having to put her through more but didn't feel like we had a better option if we want to take her home one day.

So this morning, we came in hoping that she would start gaining weight to make it by next Tuesday, had both adjusted our work schedules accordingly, and then ran into the surgeon on our way in.  WHAT?!  You say you want to do surgery tomorrow anyway?!  I couldn't believe my ears and I think they noticed my mouth drop open!  Apparently last night she miraculously gained some weight and is at 2.2 kilos.  He wanted her to be 2.5 kilos originally, then on Sunday he said he'd take her between 2.3 and 2.5 kilos, then today said let's just get it done so she can grow...2.2 kilos is close enough and waiting 4 more days won't make a big enough difference at this point.  WOW!  How bipolar do I feel since last night all I could do is cry at her bedside until I went to RMH and today I'm laughing at her bedside after hearing this good news.  Bipolar...hormonal...all the same at this point!  I think knowing my due date was today made all of this so much harder to handle emotionally.  And Zoey didn't seem to notice a thing and took it all in stride like a champ...like usual.  She really showed me up yesterday and I told her she's tougher than her Mommy which is a pretty big challenge.

SOOOOO....Zoey is scheduled to have surgery tomorrow 4/18 sometime in the afternoon.  The plan is that they will open her back up, reconnect her intestines, insert a G-tube (which allows us to feed directly into her stomach if oral feeds take some time), create a port to let infectious stuff ooze out over the next few days, do a cholangiogram in her gallbladder to help flush the tpn crap out, and possibly take her appendix out.  I thought he was kidding when he mentioned the appendix but said she didn't need it (and joked that only cows and rabbits do to process the grass they eat) and it's only purpose was to keep him up at night.   We still don't know what the appendix does but she doesn't need it so he might get rid of it to alleviate any potential future issues.  Oofdah!  That's a lot!  But she can handle it.  So there probably won't be a post-surgery update until late tomorrow based on when they will take her to the OR and how much has to be done.  Today and tonight we'll say our prayers and hope he will still take her tomorrow and that she'll make it through all of it.  It sounds like they'll keep her intubated for a day or so after surgery just so they can keep her on some pain meds and not worry about her having any desats or other breathing issues since the fentanyl usually keeps her too relaxed to breathe effectively (like her parents who also don't like to breathe when on pain meds after surgery).

Sorry for another really long post.  At this point we have no idea how long she'll need to be here after surgery.  What we know at this point is that she just needs to show she can feed and grow like a normal baby and we can take her home.  How long that will take...who knows.  But with the G-tube, we hope it will help get us there quicker since that's a built in back-up plan if she's not gaining weight from oral feeds.