Zoey's First Easter

Today was Zoey's first Easter!  When we got there the nurse had put a pink bow on her head for Easter...it was really cute!  And somehow Zoey showed a 10 gram increase in weight last night.  No one can believe this since she was dumping so much during the day.  Her night nurse even weighed her 3 times to make sure.  While there is room for error, at the worst, she broke even in weight yesterday.  After talking with her nurse last night and figuring out the only thing that changed a few days ago was her supplements becoming oral after being taken out of her TPN IV, we discussed this with the Neonatologist and new resident in rounds today and they were going to have the pharmacy figure out a way to put them back in.  We hope that this will help her weight gain get back to what it was at the beginning of the week.




My parents also came down today which was nice.  They watched Zoey get a bath today and got to see how much she LOVES the water and bath time.  She was awake about an hour before the bath so was completely wore out by the time her bath was done.  She no more got dressed and was out cold for a big, long nap.  She got to wear her first outfit today too that wasn't owned by the hospital.  It's a preemie size and fit her perfectly.  The nurse doesn't think she'll be in preemie sizes for too much longer.  If you didn't notice, Zoey was she's also sticking her tongue out for the picture because she wants everyone to know how much personality she has already!

Zoey doesn't like change

So we haven't posted anything the past few days because not much has changed with Zoey.  She had a number of days where she had amazing weight gains but all good things come to an end.  The past 3 days she has lost weight and we are expecting the same tonight because her output was very large today even compared to the past few days.  We were talking to the nurse to try and figure out what has changed so she was looking through her chart as we discussed possibilities.  Her supplements became oral 3 days ago so instead of going into her veins, they've been going into her tummy through her feeding tube.  She seems to not be tolerating this very well and is dumping lots of her input.  We discussed this with her nurse on our way out tonight and it will be discussed in rounds tomorrow morning to see if there is something we can do to get her gaining weight again.  Eventually she'll have the TPN stopped and will have to have her supplements given orally again but I think we'll have to put the supplements back in the TPN and cross the intolerance bridge at a later date when we have to.  For the week we should still be up in weight even if she drops a lot tonight.            
                                            
 Ray and I have been here since Thursday night together so have gotten lots of good quality time with each other and with Zoey.  I am grateful for the progress she has made this week and just hope we can keep going in that direction next week.  Apparently Zoey is telling us already that she doesn't like change.  She slept a lot today so we think she was trying to conserve all the calories that she could.  Awake or asleep, I still loved holding here LOTS this weekend!!

Wednesday update

Not much happened today which is a nice and much needed break for her.  Zoey and I cuddled and worked on feeding before having to return to work for a couple of days.  These days always seem to go the quickest.  We talked a little bit about how we should decorate her room and I gave her many words of encouragement to keep growing the way she has been.  Apparently having her on 3 different types of lipids is paying off.  She gained another 60 grams on Sunday so more progress in the right direction.  This puts her at 4 pounds 7 oz approximately.  Thank you to everyone who continues to pray for her and support us through this journey.  We can see it paying off again!!

BOOM! Zoey hit another milestone!

YAY!  I made it past 4 pounds finally!!!

It seems Zoey is just as excited as we are about finally packing on some grams which have added up to ounces.  We proceed with caution and hope she doesn't lose it as a result of post surgery fluid retention but we've been told we would see a decline in weight by this point if that were the case.  She seems to be on a roll right now and maybe all those lipids and other things they're giving her are finally adding up.  In the past 3 nights now, she has gained 60 grams, then 70 grams, and tonight a whopping 95 grams!  That is about 7 days worth of weight gain packed into 3 days.  Wooohoo!! 

It seems like our goal of having her gain weight is finally headed in the right direction.  I joked with her nurse today that at this rate, she'll be having surgery on Friday to put her stomach back together.  Zoey's total weight is 4 pounds 5 ounces now!  Definitely a milestone since she's been stuck in the 3 pound range for sooooo long.


Zoey's eyes seem to be recovering well from surgery.  The first few days were rough but they gave her Tylenol for the pain and have been putting in various types of drops to help them heal, prevent infection, etc.  Her eyes are looking less puffy now and she was opening her eyes today finally which the nurses have only seen her do that a few times in the past few days. 



 










She was also taken off the nasal cannula and has been breathing on her own since Sunday. 

They also re-started her feeds and are starting at 3mL per hour which is down from 11mL per hour prior to surgery.  The original plan was to increase her feeds 1mL every 12 hours, but they want to try and increase her feeds 1mL every 6 hours.  This will get her back to the goal feed amount of 11mL in about 2 days as opposed to 4 days.  This is assuming she tolerates her feeds again which she always seems to be sensitive to when they have to stop them.  We hope she isn't just dumping it all right back out and they can continue to increase them at a higher rate to get her weight up and hopefully get her off the TPN soon helping the liver issues. 

Zoey and I got to cuddle a couple different times today.  We snuggled first just with her swaddled but then had some kangaroo time later.  She was so cute looking up at me and it felt like she was trying to tell me how she was feeling.  I read a couple of books to her and she fell asleep for a while.  Then while kangarooing, she seemed to be pretty uncomfortable at first because of her ostomy bag, but after a couple adjustments, she settled in like normal and passed out big time...and then so did I!  We snoozed for a while and I sat there kissing the top of her head for the rest of the time.  It was just as perfect as every time.  I didn't want to stop but she needed a diaper change and eye drops and I needed to get going back to RMH so I could get to bed.  She never seems like she wants to be done kangarooing but handles it like a big girl and doesn't even cry when they pick her off of me.  And on that note, I'll finish for the day so I can get to bed so I can get up and get to her at a decent time tomorrow before I have to head back to Eau Claire again for work.  P.S. for everyone who has been telling me to give her a kiss from you, I did that today and told her who they all were from.  I think she felt the love!!

 

A day of healing

Zoey had a day of no one poking her, no one examining her, just a whole lot of nothing other than attempting to get back to breathing normally & getting those calories & feedings pumped in.  Unfortunately she had a bad spell this morning & caused enough concern that her feeding was stopped so she could focus on the respiratory side of things & get back to room air.  While all common & not unexpected after having the surgery, still frustrating once again that we did the right thing with her eye surgery, only to still lose a day of feeding regardless.  She did go from 2 litres to 1 litre so that was about the only good thing for the day.  Hopefully overnight she goes back to room air & they re-start her back on the feeding.  

Big Friday

I got to Rochester this morning at around 3:30am from Madison where I was at the Coaches Clinic I go to every year.  Got the call Thursday night from Sally after she talked to the Nurse practitioner only to find out that the NP screwed up & called her back to fix it, massively unprofessional.  After having the honor of speaking at the clinic that I quite literally don't remember what I even talked about, as all I could think about was Zoey, I hung out with several colleagues for a few hours & headed back to the hotel to crash & get on the road early.  Couldn't sleep so I hit the road, got pulled over, made a 45 minute wrong turn (should've followed my GPS, reason I have that thing I guess, & a 3 hour drive turned into 4 & half hour tour across southern Wisconsin.  Got to RMH in Rochester & crashed, got up at 7 & headed to the NICU to speak with Zoey's surgeon about her liver, gall bladder, NEC, the ophthalmologist, to speak about the eye test & surgery, figure how in the heck the NP made the call she did & make it a point to not have this happen to any other families, & the NICU doctors to think big picture.

It was a weird day of decisions to indecision all the while pressing the issue to make things happen.  Got there just as they were giving Zoey her eye drops prepping her for the ROP exam in that next hour and stopping her feedings again.  While in that time I started out speaking with her surgeon thinking that the liver biopsy would be happening during the eye surgery that we were under the understanding that would be happening after exam as the eye doc had stated would be 95% most likely be happening in days past.  In the next hour between rounds being completed & the exam being done things got re-analyzed by her surgeon & they were no longer of the opinion of the likelihood of Zoey's condition actually being biliary atresia, so much so that they no longer wanted to do the liver biopsy.  We pray that this is ONLY TPN cholestasis, as BA is some scary scary reality to deal with.  While the worst road of TPN cholestasis is very ugly, her surgeon and NICU team think with the sodium protocol changes & stopping the continual stoppages of her feedings with all the eye test stuff.  Then at this point things got a bit weird, as the eye doc no longer was of the opinion doing the surgery today was necessary as her eyes actually marginally improved from earlier in the week, which meant he wanted to put off doing the surgery again & do more tests next week.  Running short on sleep & energy I felt defeated & asked to speak with the lead NICU doc so we could have an entire picture painted for the eye doc of everything going on, as it was clear this was not the case for his train of thought.  The NICU lead, myself, & the eye doc pow-wowed for about 10 minutes & we all spoke our thoughts on perspective of the situation & I delicately advocated (yeah right haha) for Zoey in the best way possible.  At the end of the conversation we concluded that the eye surgery needed to be done today, provided we could get her into an operating room, which unscheduled on a Friday in Rochester is a project.  So I waited for a few hours, we got a call out of no where that a room was open & it was go time around 11:30am.  10 minutes later we got another call that an instrument was unavailable so it was delayed, clearly agitating our nurse & the NICU doc.  Waited another half hour & surgery was going to be at 3:30.  So that starting & stopping was frustrating.  Held her for a bit & had just put her back when the Stefano's dropped in out of the blue, which was outstanding timing & was great as usual.  The had been on their way to Kansas City for a soccer tournament for Ryan when they got the call that it was cancelled just short of their exit to go to Rochester, so they made the decision to just keep heading south to come visit Zoey & I as they already had the plan to be travelling.  We spent another nice afternoon visiting & being with Zoey.  Got the update that it was moved up to 2:30 & we all went down in the elevator & up to as far as they'd let us go before taking Zoey the rest of the way for the surgery.  I gave her a pep-talk, which was probably more beneficial for me as she's clearly the tough one (must get it from her momma).  Got a bit of a surprise that they would be doing both of her eyes, as they didn't want to come back to do the surgeries again later, which I completely agreed with, however hours earlier it was just the Right eye, again par for course.  It was really great to have the Stefano's there, though.  Jan, Billy, & Ryan made going down to that blasted OR a tolerable experience.  I was dreading doing it myself & with how exhausted as I was I knew I was going to lose it.  I made it through it & they waited with me for THREE & A HALF HOURS while they did her eye surgeries.  I did my best to update people & not go bonkers while the seconds & minutes trickled by.  We sat in the NICU waiting room watching Wisconsin blow up my NCAA bracket & other teams helped with passing the afternoon.  At a bit after 6 Zoey was back in her room & waking up from the anesthesia & tugging at her intubation tube that they had put in & was having none of it.  They decided to extubate her as she had been breathing so well previous to the surgery.  They have been giving her some oxygen in the last hour or so as she hasn't been doing as well as she needs to on her own.  They'll be putting on a lo-flow tube to help her get through the next few hours & back to par, which their confident she will do.  They were impressed she did so well to get out of anesthesia so quickly & breath for the most part on her own.  Small potatoes considering.



So, the next week is simple, or at least is supposed to be, which will remain to be seen.  She will have feeds restarted tonight at some point at low increment & then amped up as quickly as she tolerates as she was maxed out previous to the surgery.  She needs to put on weight & she needs to do it consistently to PROVE that it's not worsening TPN cholestasis or the dreaded BA.  So, we wait.  We pray & we wait with breaths held, eyes wide open watching, hands steepled, praying this works this time around. 

Not much for answers, more tests

So one of the biggest things we've been focusing on has been the results of the HIDA scan done Wednesday and part two Thursday.  On the way home around 5:30pm, something told me to call and find out if they had the results yet as they hadn't by the time I left this afternoon.  The NP told me first that she does have biliary atresia but then called back after I lost it crying in the car on the way home and clarified saying the results are consistent with biliary atresia but it also fits her having TPN cholestasis which they say is more likely.  This has been a concern since day one of her having because of needing to be on TPN to grow.  So now, Zoey will have a liver biopsy done because this is the only way to determine which of the two liver problems she has.  If it is the TPN cholestatis which we would prefer, they have to keep her on the TPN to help her grow but then do their best to get her off of it as soon as they can and her body will work out the problem after that.  On the up side, the ultrasound she had showed she does not have gall stones and that her gall bladder looks healthier than the last time they looked at it which was 2 or 3 weeks ago.

After hearing the news of her liver, Ray ended up driving there in the middle of the night because he couldn't sleep.  I was about 10 miles from Eau Claire when I got the call and just about turned around right then and there to head back.  I realized in the long run this wouldn't help anything other than my immediate emotional state and to save the sick time/FMLA hours for leave with her when she has surgery or gets to come home.  Zoey is still set to have her eye exam Friday morning and today might be the day they do laser surgery on her right eye.  Ray was planning on being there for that anyway.  We hope she has surgery today so that we can work on her weight gain because every time she has the eye exam or any other procedure they typically have to stop feeds for a number of hours which doesn't help.  Ray also wanted to be there to try and find out more definitively when they think they might do the liver biopsy.