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.

I'm 10 weeks old today and had a HIDA scan

Zoey is 10 weeks old already and had a busy day.  As usual she seemed to be unphased by anything and handled it like a champ.  Since her bilirubin levels have been elevated and are still going up, the Drs wanted to do more tests to try and figure out what it going on and if there's a bigger issue with her liver.  While the ultrasound a couple days ago helped rule out a little bit, it did not completely rule out Biliary Atresia which is a very severe disease in babies but not that common.  The HIDA scan done today was to test for that and they inject her with a radioactive chemical and then scan her system to see if it makes it through the liver or if the ducts that let the bile out are clogged in a really dumbed down version.  Since preemie's systems are sluggish and slow for moving stuff through them, the scan didn't show much other than the radioactive stuff had made it to the liver.  They want to re-scan tomorrow to see where the substance has moved to.  The GI doctor and her surgeon both highly doubt that she has biliary atresia with what they have seen so far coupled with her blood work results.  This was superb news but want to finish the test to be sure.  That being said, it doesn't explain why her bilirubin is high and she is therefore jaundice and has been for a number of days despite the meds they have her on to lower it.  Our little trooper will finish the scan tomorrow and possibly have another ultrasound to see if there's a gall stone that was missed on the ultrasound a couple days ago.

The other issue of concern has been her weight gain or the lack thereof. She had 2 days of 20 gram weight gains in a row but lost 10 grams today. Frustrating since they have to stop her feeds for hours every time they do these procedures. Hopefully all these tests will be done this week so all the extra stuff they are giving her to plump up will help if they aren't having to stop her feeds.  Tomorrow will be another busy day and Friday yet another ROP eye exam to see if her eyes are ready for surgery.

Zoey was pretending to sleep while taking pictures of her today and then decided to try and block my shot.  She obviously poses so much better for Daddy.  She was also very awake during this point of the day and seemed to be really messing with me.  It is so neat to see her personality coming out already and then she smirks at me.  I swear somedays she knows what I'm saying to her!  Despite everything she's going through, she seems to still have a sense of humor which I wouldn't have imagined babies could have, but when you spend enough time with this little peanut, I bet you'll agree.

Stressful day with a great ending

Woke up this morning way too early to drive through the blizzard to make it to my 9am appointment to get my picc line removed after 6 weeks of antibiotics after my surgery.  What a relief to get that stupid thing out.  Few more checkups & follow-ups with my surgeon & hopefully be done with Rochester appointments.

Our peaceful little babe

I immediately headed over to the NICU to get everything that's been going on clarified & figure out if there is an up-to-date plan.  There wasn't other than a slew of tests for Zoey today.  The short version of conversion & concern today was leaning towards Zoey's liver actually being diseased to the point of needed a transplant & that being the over-riding concern all day & having discussions several times with docs concerning that.  There has been massive concern & just conjecture why Zoey hasn't gained weight over the past week & what has felt like throwing darts at the board at many times.  Numerous specialists came by & checked in & gave opinions & waiting for her ultrasound results & on & on & on.  It was a ridiculously stressful day.  The fellow doctor who has made a concerted effort over the past few weeks to clarify our questions & communicate with the issues we've been having with our resident dropped in several times to make sure I was on the level as there were a lot of tests & a lot of people in & out.  Days like this having Sally at work & handling everything by myself with the repercussions of what these tests could mean was a lot to deal with.  I was sending text messages to her & trying to communicate as best as possible as she does the same when I'm home & she's there.  Not ideal but we deal with it.

I drove home after exchanging Sally's pump for the 3rd pump in a week at the home store & got an entirely different model after some strong discussion with an associate & manager.  The roads were a mess on the way home & took nearly 2 & half hours.  Doing this trip 3-5 times a week for each of us is getting to be a boring trip.

Just as I was walking in the door the fellow doctor called with great news on many levels, the most important being that Zoey's ultrasound was "not impressive," finally having that phrase be used as a good thing was a welcome change.  Being scared all day about having Zoey very likely going to go down this course of a certain rare liver disease to have a problem with her sodium that they're going to change courses on treatment was the best phone call I've ever received.  So they are changing her to a new fortifier that will be jacking up her lipids in another attempt to hopefully get her weight gain going again.

My Picc Line that was in for 6 weeks

So, with that huge news off our plates for the immediate moment we have a new plan to go with & put our faith in.  As a bonus, the fellow also removed our resident from Zoey's case & replaced her with another resident who we've dealt with a couple times that we really like & actually communicates.  She also seems to be a lot smarter and can explain all the "what and why" of everything that's going on or at least can confidently say she doesn't know but will find out and does so.  Amazing how a day can flip on itself multiple times & end up being okay at the end of it.

Her eye test is scheduled for tomorrow however they won't be doing the surgery unless it's an emergency, so it may be Wednesday, may be Thursday, we & the NICU really don't know as it goes by the eye doc's schedule which they admittedly haven't had communicated well with them.  Hopefully Wednesday or Thursday will be the day as Sally will be there.

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Sunday Funday

Zoey had a busy day today!  When I got there, we tried nursing again.  I think she was too sleepy to concentrate on the task at hand so I told her we would work on that when she's more awake.  It was cool to realize that I'm starting to notice when her sleep and awake times are.  The awake times are very few and very short at this point still, but still a neat Mom moment to start picking up on that.

Next was Zoey's bath since Sunday is one of her designated bath days.  This was only about the third time I've been able to bathe her because of being at work but this time was so different than before because we put her in a box with a hammock to suspend her in the water instead of just a bed bath.  Oh boy....did she LOVE this!  The nurse said it really makes them feel like they're in the womb still so they find comfort in that but she was Soooooo relaxed!  We kept trying to adjust her head straight but she kept moving it back to be more in the water (as you can see in the picture).  We have our own little fish it seems. :-)  The nurse said that in her 23 years of working in the NICU this was the first time she remembers putting a baby in the bath bin where they didn't cry and loved it so much.  It was neat hearing her say this.  She kept commenting on how calm Zoey is and just so content with everything in life.

Before having to leave to head back to Eau Claire since I work Monday and Tuesday, we got in some more kangaroo time.  ALWAYS my favorite part of every day I'm down there. Her stats improved almost immediately.  The nurse also commented on this how relaxed she got and how fast she settled in on me after looking at her stats.  Her heart rate dropped to about 120 beats per minute which was still a healthy range and her oxygen saturation was at 100% for quite a while.  We both fell asleep for a while and when I woke up I realized I needed to leave soon so I sat there for another 30 minutes delaying the inevitable.  Every day I have to leave her is hard, but today was so much more difficult for some reason.  I don't know if it was just from everything we had done together this weekend or if it's just from this being a long process or both maybe.  Who knows for sure, but as usual, I cried saying goodbye to her, I cried periodically on the way home, and then I cried when I tried telling Ray about it, and again while trying to fall asleep (I was too sad last night to sleep).  It might all be because she's in the room where families prepare to go home, because she's made some changes this past week like getting into a big girl crib, I don't really know, but I think it's all making me wish we were just home already.  I realize that in time this will happen but I am getting to want that time to be now.  Guess I will just hurry up and wait for that...something that has gotten to be a regular routine for us throughout this process.

Just hanging out

Zoey and I did a lot of hanging out today.  Ray was in Eau Claire still because he had a wedding to go to tonight.  Zoey and I did kangaroo time twice for about 3 1/2 hours which was great!  I never want to end it no matter how uncomfortable I am or how bad I have to pee or how hungry I am.  I'd rather just stay there and she always looks so cute and comfy that the nurses don't even want to move her.  She's looking more and more like a normal baby all the time despite still being so small.

So weight gain is the biggest set back right now.  Without it we can't move forward.  During rounds this morning they looked up her weight exactly one week ago and it was the exact same as today.  That was a major bummer since she had days with gains, but apparently her days with losses added up to the same amount.  For those of you who know me well you know that math is not my strong point, but I guess I didn't take the time to do the math this time so no math jokes! :-)  They added more micro lipids to her milk today and are leaving her TPN alone for now but are watching it closely to see if there's anything more they should do because they don't want to pump her up too much because that's not healthy either.  Last night, I told Ray I might just take a pound off my thigh and add it to her and see if they notice.  He thought that would be awkward.  I'm just so ready to have her home...I just wish I could do something to help her grow faster.  The Drs joked that I should eat some happy meals.

It sounds like she'll have her eye exam Monday or Tuesday and then surgery wouldn't be until later in the week.  Not sure if that means the opthamology Dr finally returned the 2 pages and 1 email that was sent to him yesterday or what.  We'll just have to wait and see what the plan becomes this week.

My sister, Lisa and my niece, Madison were finally able to make it down today with my parents to see Miss Zoey.  This was a complete surprise for me...I had NO idea they were coming so when I saw them I started crying.  I was just overwhelmed and overjoyed.  Again shows how I love when family comes to visit!  They thought Zoey looked so small compared to her pictures which made me chuckle because she's more than double her birth weight.  We joked that the camera adds 10 pounds.  They thought she looked so cute!  It was nice to catch up and I was so glad they made it down.

On a totally different note, while kangarooing, I was listening to the nurses talking and started thinking about the population in Zoey's room right now.  Then I realized Zoey is the only girl in there and yesterday there were 5 boys in there but 2 got shipped to another hospital so she's all alone with 3 boys in there now.  Just thought it was interesting and Daddy's going to have his work cut out for him when she's a teenager if this is how she'll be with the boys when she gets older ;-)

Thursday/Friday recap

At this point in the day I literally couldn't come up with a better title than Thursday/Friday recap but at least it's accurate.  Just wanted to take a few minutes to recap the last two days.  Yesterday, they did another ROP eye exam.  They have determined that surgery is absolutely going to happen on her right eye but now the question is when.  They will do another ROP sometime the beginning of this week and will determine if her eyes have the right amount of fibrous tissue build up to maximize the effectiveness of the surgery so her eyes can continue to develop properly.  Basically they are waiting for her benefit at this point but the poor girl has to keep going through the eye exams which we are told are unpleasant for her until they see what they want in her eyes.

Zoey did not gain any weight on Thursday so they changed up some things in her TPN, the IV supplement she's been on forever and they want to get her off.  Unfortunately she still really needs it though to keep growing and gaining weight since the half of her intestines that are working just aren't giving her body enough time to absorb the right amount of nutrients and calories from the milk she's being fed.  Mostly all they are giving her at this point is dextrose and amino acids which in lamens terms means sugar and protein.  The surgeon suggested this in rounds this morning to try to plump her up so they can get her put back together.  Friday's weigh in actually showed a 30 gram loss in weight but the nurse said with the new TPN hopefully she'll really show the effects of that in the coming days by packing on the ounces.

Thankfully this Mama was in Rochester today, Friday, because some big things happened.  First, I needed to exchange the pump I've been using because I think I wore it out or something...it just wasn't working the same as when I got it causing me some pain.  So I exchanged it without a problem and thought all was great.  Boy, was I wrong!  More on that in a minute.  Next, I felt really proud as I reflected on my own health progress as I walked the long halls of the subway from the parking ramp to the Mayo health store because a little over a month ago, I was unable to walk that whole distance.  Between post c-section pain and the blood pressure issues I was still having, it was quite a struggle.  It might not sound like much but the subway totals just over 5 miles.  Granted, I was not walking the whole length, but today I went quite a ways down and back and did the stairs too!  It really sounds silly as I type it, but it reminded me of how much I've bounced back too.  Much later, when I got back to RMH at 930pm, I went to do my motherly duties and pump some more liquid gold and the new pump that I just exchanged earlier today did not work.  WHAT?!  You've got to be kidding me!  This is my lifeline and now I have nothing to get me through the night, much less the weekend.  So I checked with RMH...nothing.  I called the NICU and they said they'd check and get back to me.  I needed the one thing you can't just to buy at Target.  SO I headed back to the hospital to get at least one more pumping in for the night.  On my way back there, the charge nurse called and said she had one for me to use for the weekend so this was heaven sent!  But guess what store is only open 8am-5pm Monday-Friday?  Yep, you guessed it...the Mayo health store who is renting me the machine that doesn't work.  Thankfully Ray will be here on Monday and will resolve it for me (Thanks in advance!) but that really makes things difficult when they are only open such limited hours.

And finally, I saved the best for last and I'll try saying this without TMI.  To date, Zoey has been on tube feeds and will eventually have to learn how to suck, swallow, and breathe ALL at the same time to eat normally one day in the future.  Today was day 1 of trying to have her latch on to Mama to start practicing.  Zoey handled it like a PRO and I couldn't have been happier!  It feels like we finally have one less thing to worry about as long as she keeps it up.  They've been giving her a pacifier too in order to encourage that reflex and she's been taking that well.  Later when starting Kangaroo care with her, she laid there like she was ready to practice again.  It was cute and I laughed and told her I was proud of her for wanting to put more work into it but that we were only practicing it once a day right now and it was time for her to just relax for us to nap together.  So we did just that.  Despite the nap, I'm exhausted as I've been up since 5am so I'm off to bed since the alarm will be going off in a couple hours, and then a couple hours after that, and a couple hours after that.

Wednesday Update

Daddy & Zoey had a fun day today after I hurried back down after PT/OT appointments in EC.  We KKare'd for about 3 hours until Zoey had a little whoopsies with her bag that created an opportunity for............ BATH TIME!!!  Doing a bath in her crib was entirely more enjoyable than doing it in that awful tube, so that was awesome.  If you notice, Daddy styled Zoey's hair tonight in the pictures.  I gave her a 'lil updo with a slicked back look on the sides.  You can tell by her looking back she thinks it looks GOOD!  I'll work on more styles as she continues to grow out this amazing head of hair she

 continues to manufacture.  The nurse we had today seems to be finally warming up & relaxing & not being humbug, guess it only took a month of being with us for a few weeks in a row.  I took a video you can watch of the beginning of the bath, the girl loves it.  My battery went dead before when I washed her hair, she literally pushed off the bed & arched into me washing her hair, what a prima-donna, this girl is going to be all about spa days I can already tell.  Fairly confident both Sally & Zoey deserve several & will be sharing in many over the years as she grows up into beautiful young girl and lady & then she'll be 14 when I will not allow her to leave the house, EVER.  Tomorrow is a big day for her right away in the morning with her 4th ROP eye test in the last 2 weeks that'll decide if we do the surgery or not.  I hope we don't have to continue to wait, I quite honestly want a decision & make it happen or there's been a significant improvement in her eye & we can just move on to gaining weight (up 10 grams for the day) & get to this elusive surgery.

2 days updates

Sally & I came back down yesterday morning after my dentist appointment.  Moving dentist appointments in EC is a nightmare.  We spent both a majority of yesterday & today with Zoey in the NICU.  Holding & KKare most of the day between pumping & doctors & breaks.  She weighed in at 3 pounds 13 ounces last night on her "new" scale in the new bed she was moved to Sunday, which is being called the "big girl crib" affectionately by the nurses, as well as another new room due to the wonderful MRSA.  She looks borderline ridiculous due to her size but it's a step for her that she's out of the "tube" & on her way to normal baby-dom.  Yes teachers out there I said baby-dom.  Her ROP eye exam unfortunately went poorly.  Her right eye is not developing appropriately & as of now is 50/50 for needing laser eye surgery.  Found this out with a phone call with a doctor we've never met.  We'll find out Thursday after her re-check again, which is the eye doc's surgery day, so if it continues to deteriorate over the next 2 days, he'll do surgery that day.  He decided to compare what she'd be without the surgery to Stevie Wonder, I failed to see the humor, but has been par for the course lately.  The great news is the success rate of the surgery is 92-95% to then stop the deterioration & essentially re-boot the development to have reasonable eye-sight.  Seeing Zoey with blood-shot red eyes is tough, those days are tough for her & she has to have no lights in the room for the day.  Her heart rate spikes & she's stressed out & she has to have feedings pulled for several hours.  Hopefully if she needs the surgery she can just get it done & not be prodded at so much in terms of her eyes, much less everything else for that matter.  Sally & I went home for tonight as she has to work tomorrow & Thursday & I have appointments tomorrow & I'll go back so I can be there Thursday morning for the in-person conversation with the doctor & be there for Zoey if she indeed does have the surgery.

Massive Positive clouded with stupid negativity

Another milestone today.  Our little peanut had her isolette top opened all the way up, meaning all room air, no help breathing, the same stuff we all do, for better or worse for that matter.  It's a huge step for her to be able to go home.  In addition, this also means that she's able to maintain her own body temperature which is another requirement of going home.  True, she appears to be all bundled up in some blankets but so is her Mommy typically so no big surprise.  With both of those positives, I'll be honest, unfortunately Sally & I are pretty upset right now.  While this is awesome, it has been confirmed that Zoey now has "colonized" MRSA on her skin.  It's common in NICUs and hospitals, it's common for babies to have some form of STAPH on their skin, but it sholdn't be that common to have all this crap get transferred.
From our perspective, she got this while in the NICU from the other baby boy she shared nurses with as he was isolated a few days ago with the same diagnosis yet still shared the same nurse.  There are the only 2 babies that have it, so not too much of a stretch to figure out what happened, which couldn't be refuted by the doctors either.  The coincidences are just too much.  They don't want to do any blood draws to make sure she doesn't have it in her blood as it would create a port to then infect her blood.  This Friday marks the 6 week point post surgery meaning she's due for a reversal of the original surgery in short time, so when they have to cut her open to put her intestines back together she's at an even higher rate now for the MRSA to get to her blood during the surgery.  She has been moved back to an isolated room to prevent the spread of it and the nurses have to wear masks & gloves with every thing they do.  While not the end of the world, probably should have been a sign that she needed a different nurse when the last baby was diagnosed.  But that's not their policy and they claim it cannot spread that way.  So needless to say, we both hit our breaking point tonight and took turns melting down into a big sloppy mess to deal with all the stress and frustration.
While we cannot change the past, we are so pleased with her other positive steps forward and hope that this doesn't turn into a major set back for her.  They say it won't delay her surgery but now there are larger risks for infection than there were before.  As if we didn't feel it before, we are even more anxious to get Zoey home.  At this point, we are just trying to stay positive and make it through this without losing it on someone.  While writing this we got a call saying they were doing labs, which means a poke into the blood stream possibly infecting her blood with MRSA after just being told by the Neonatologist that they didn't want to do this for that exact reason.  So if they decide to poke her for it, then we told them we want her blood tested for MRSA.  Because they don't want to take more blood than they have to, and because she's not showing any signs that her blood is infected, they want to only take enough to test her nutritional levels to help her keep growing, but not to test for MRSA.  So we wait and see and hope for the best.  It will be interesting to see how tomorrow goes once we get down there.
Ray asked me to "un-Ray-ify" it so it wasn't too angry but still informational. While not taking all of his intensity out of it, I did calm it down some as we did with each other throughout the night. Hopefully some sleep will help and tomorrow we start fresh.

Saturday Update

Zoey had a great day. Up 30 more grams, was actually up 10 yesterday, her nurse apparently added poorly so for the entire week she's moved up every day.  She's now at 3 pounds 13 ounces.  As I sit with her through the days I just marvel how she's grown, especially over the last 2 weeks.  It's making the frustration of being here seem less & less as I can visibly see the window of getting out of here shrink.  I held her for about 3 hours today & woke up to Uncle Billy, Aunt Jan, & Ryan walk in & come down & visit Zoey & I for the afternoon/evening.  It's great to see people excited about how much bigger/better she looks since the last time they saw her in person, which I believe was about 3 weeks or so ago.  So I know I'm not going crazy when I think she's doing better when non-nurses/docs say so, ha, so that's wonderful.  Course, Jan is a nurse so that kind of kicks my point in the shins, but she's family, so that makes it okay.  The last time Ryan got to see her was when she was so sick, so that was neat to see him happy & such a 180 degree from where she was last time.  I appreciate the genuine enthusiasm that the Stefano's have in seeing Zoey & checking in.  Coming from such a small family that I have, coupled with Sally's parents, sister & brother & their spouses, I'm a lucky guy to have them (& all her family spread out) in my daughter's life.  I It's great when people are able to visit & get to see Zoey & see her progress, means a lot to all of us.

On a poopy note, Zoey did test positive for staph on her skin, while common, really aggravates us.  While I realize NICU's have the highest rates of staph/MRSA in hospitals and it's common blah blah blah, this on top of everything else going on there in our NICU the last week has me a bit irked.  Last time something "common" happened to Zoey she got sick & had to have surgery, so the very phrase of "common" is not a good word to use around us.  We find out tomorrow if it actually is MRSA, and boy, that's going to frustrate the heck out of us if it is that, which means moving rooms, going back into a isolated room for the rest of the time here, & dealing with clearing that up.  Good stuff.

Friday night update

Ray's post.  Came back to Rochester today after spending the last few days in Eau Claire and taking care of stuff for job stuff, football stuff, and everything in between. Was really good to be able to come and hold Zoey and make sure that she's okay in continuing the progress she needs to make. She's gained 30 grams the previous 2 nights however tonight she lost 10 grams, so she took a day off so she may have to stop slacking and make sure she puts on again over the weekend. They upped feedings again so that should help as she's now over 3 and a half pounds and trying to get towards that 5 pound weight so she can finally have the surgery again and put her back together for lack of a better way than putting it.  There has been some pretty disappointing miscommunications within the NICU as a nurse overdosed 1 of the babies which made her really really sick and another nurse somehow pulled out a line or tube or something that had been stitched into the little baby so that has created a lot of problems and stress between the doctors & the nurses, you can feel it pretty thick in the room.  The boy that was brought in the same day Zoey was born also has contracted MRSA, so all the babies had to get tested in the entire NICU.  Especially disconcerting as Zoey's nurse and the boys nurse are the exact same everyday so it's possible that the nurse brought things back and forth and Zoey could end up with it if they didn't use proper clean procedures.  She's not showing any symptoms yet so we just have to pray that they didn't get back to her and that every other baby as well as the boy gets well as quickly as possible as soon as possible.  Several families in last week have asked that certain nurses don't be with their child which is not a good feeling for anybody involved.  There's a few that we don't like for their sloppiness and lack of urgency and don't necessarily get along with either, so it will be interesting the rest of the way here for everybody involved.  Our current resident continues to be a disappointment but the fellow basically gives us correct information after we get told the wrong thing the first time.  Being here for so long we have seen some of the great, some of the good, some of the ugly, and some of the just downright bad.  Hopefully the department head who works this weekend can get everyone back to good.  With everybody SO stressed out as they are in the situation to begin with, to have the parents around us so concerned about if their child is getting enough proper care and the stress between the nurses and doctors, it just makes for a very awkward atmosphere.  This is the first time I've sensed it so I guess that's a positive.

Mommy/Daughter Day

Since today was Mommy's only day off this week, I went down to Rochester for the day after my dentist appointment. I got to do Kangaroo care twice and it was AMAZING! It was a very positive day for this Mommy because with being at work half of the week there are times when I feel less connected to her than Ray since he's down there more right now and is able to build those important bonds. By no means do I mean it's a competition or that I have to have the same connection with her as Ray does because I know that's not the way it will be nor should it be. What I mean is that I could see Zoey responding to him differently than with me a lot more recently, but today, she responded to me in that same way. It was such a GREAT moment for me to feel that. This was huge for me since I was really upset I had to miss her important milestone this week not getting to see her breathe on her own for the first time. YAY for Mommy/Zoey time! I was excited to get home to tell Ray how good today felt for my heart. We both cried.

Zoey's head ultrasound came back clear so that's very good news and we don't have to worry about any brain bleeds for now. They did an xray of her tummy again to see if they could tell why she may have some recent blood output. Nothing conclusive was found so they'll be keeping a close eye on it. They think it may be from the obstruction that they already know about so if that's the case, hopefully it doesn't cause more issues because that would require them to do surgery earlier than they want to.

Whaaaaaat? The next E*Trade commercial baby

Zoey weighed in at 3 pounds 8 ounces after a 20 gram gain last night so that's more progress in the right direction.


It was very hectic in the NICU today with all the other babies in the room requiring a lot of extra special attention. And there laid Zoey so peaceful and calm and independent. It was amazing despite all the commotion around us that Zoey and I were able to fall asleep during most of both of our Kangaroo care sessions. I think that just speaks to what our priority was today. It was just Zoey and I and nothing else mattered. Such a rewarding day!

Big Week ahead for Zoey

 Zoey kicked off this week with having her nasal cannula completely taken off that provided her hi-flow, meaning she's breathing COMPLETELY on her own, no help, not even putting extra oxygen into her tube (yes dear I know I should be calling it an isolette) or pressure/moisture from the c-pap.  While most are fortunate to have their baby's first milestone be crawling or something along the like, after 54 days after birth, Zoey's first major milestone is breathing on her own.  While Sally was back at work, I literally sent her the picture as soon as she was stable & handling it great, so in a way we shared the moment together as best as we could.  Nurses are repeatedly saying she looks more & more like me every day, while it may be unfortunate for her later in life (IT'S A JOKE), hopefully her big head & putting on the weight is what she needs right now.  Speaking of the weight, she went down a bit Sunday night, however she was a bit snuffly & could tell she had a bit of a upper respiratory thing going on Sunday.
She was great today however & while we KKare'd today for nearly 2.5 hours she never dipped once on her stats & held her own quite well.  I dare say I'm proud of our little peanut & her progression with her lungs.  Seeing the other babies come in & either stay or go with lung issues really speaks to the 36 hours Sally got on the betamethasone to help with Zoey's lungs.  They might have been the worst 36 hours of my life watching Sally go downhill but the payoff for Zoey (Sally really didn't know how bad she was so she doesn't get to use this one) has been remarkable while she has fought through the NEC, the infections, the blood clot, etc, etc etc.  I never really got "it," before having so in terms of being truly proud of something.  Sure we have our personal moments & siblings & relatives etc etc.  Nothing measures to the moments of your own kid though, now I get it.  Thought my uncle Andy was full of it on many things he's said about how things change, how priorities, perspectives, & many other things mold over time.  As has happened many times, he was right, & once again, I get to eat my thoughts on being how proud of your kids you will be.  Zoey's nurse for the night just called after finishing her cares & she was up 50 grams for the last 24 hours, so she's essentially even for the last 48 hours.  Hopefully she continues her trend of going up over several days & keeps packing it on.  She's 3 pounds 8 ounces (3.5 pounds) to the dime, so this next 1.5 pounds has to get on her so we can get this next surgery & get the #@*! OUT OF ROCHESTER.  I could deal with never being here ever again, which would be great for everyone since I'm cognizant of the good stuff the do here SOMETIMES.  (5.5 hours this morning spent at 1 appointment & infusion therapy misadventure has me riled up again obviously)

I digress. Tomorrow Zoey has her 2nd ROP (eye) test to make sure everything is developing along & Wednesday morning is another brain ultrasound to make sure everything is doing okay up in that noggin.  Ridiculously important tests that we pray go well.

Zoey keeps packing on the grams

Mommy is writing today and there is good news to share. Zoey had an overall good day. She has also been gaining weight steadily the past few days. Remember, 30 grams a day is her goal to gain daily. In the past few days she gained 30 grams, then 60 grams, then 90 grams, and in the past 24 hours, she gained 120 grams. 120 GRAMS!!! That's huge how it keeps going up since adding the TPN back in! This puts her weight at 3.59 pounds. Hopefully this will get her back to that 5 pound marker to do surgery. We're still focusing on baby steps of course and not rushing things with her. But I guess she listened when we told her a couple days ago that since her breathing is going well that she is to keep that up but now she needs to focus on gaining weight. I hope she listens this well forever! :-)

My parents, Allen and Krista, came to visit again today since Grandpa hasn't seen Zoey in a couple of weeks. I think he was going through withdrawals. They came while we were doing Kangaroo Care so they got to see her out and peacefully resting on Mommy. Ray helped put her back in and got her dressed so they were also able to see her awake and alert and looking around at all the sights that her brain is starting to process. It's interesting watching her try and track with her eyes when she hears voices and other noises.

On another positive note, if she keeps breathing well, they want to bring her from 1 liter of flow down to .5 liters tomorrow. She's again breathing right around room air so is requiring little help there. Everyday it seems her lungs keep growing stronger. She still has apnea spells where she forgets to breath and scares Mommy since she did this 3 times during Kangaroo care. She must have just been so comfortable and relaxed that she was forgetting to breathe but she bounces back pretty quickly and on her own which is a major positive because we don't have to alert her to breathe again, she figures it out on her own everytime. The nurses say this is a good sign that she doesn't have to be prompted to start breathing again.

I also wore Ray out this morning by spending more time at a store getting registered. We are now going to have to go through both lists and delete items that were accidentally scanned or that are duplicates that we didn't intend on being duplicates. We decided this would be easier online managing it as opposed to trying to scan and delete in the store. What an overwhelming experience even with the guidance we had. As first time parents it's interesting trying to figure out what items your child will need. Thankfully we had some guidance from relatives but it's still a lot to figure out.
Tomorrow is bittersweet for me since I know I will have to say goodbye to Zoey for a few days. Hoping my time with her tomorrow goes by very slowly and my work hours go by quickly so I can hurry and get back here. Zoey--Daddy time will be able to continue now more than him just holding her for a short time before my kangaroo time with her starts. He's so good at letting me hog the kangaroo time when I'm in town and for that I'm very greatful and appreciative! Helps get me through my days away from Zoey.

On a final note, we thank you all from the bottom of our hearts for the continued support. I'm amazed that we're still getting cards, gifts mailed, notes and messages, and hand delivered items after all this time. We are incredibly greatful and so blessed to be surrounded by so many wonderful and generous people. We also know people are following the blogs closely and anxiously waiting for updated pictures. We think she is so special to have such a following of so many wonderful people. So that ended up being lots of words but in a reader's digest version we say THANK YOU! Thank you to everyone for everything!!! None of it has gone unnoticed!

Mommy writes the update today

Well, to give Ray a break from doing the updates, I'm going to write today and maybe throughout the weekend. Ray and I drove back to Rochester today after working and having appointments the past 2 days. Ray came home Wednesday night to get away from RMH for a little longer than one night.
Upon getting into town, we went straight to the hospital to see Zoey. When we got there the nurse told us that the surgeon wanted to be paged so he could come and talk to us about the contrast study done yesterday. We weren't sure what to think of this...either he wanted to tell us about it and that there was nothing wrong, or that he wanted to tell us about his concerns personally since he knew we'd have questions we'd want to ask him as opposed to his residents, assistants, etc. While I was doing Kangaroo care and incidentally all 3 of us were napping, the surgeon came by. He said the contrast study showed that there is definitely a blockage in the lower half of her intestines so they are not able to re-feed the contents of her colostomy bag into the bottom half of her bowels to allow her to absorb more nutrients. The plan now is that they added TPN which is her nutritious supplement via her central line. They took the lipids out of it because it has caused her liver disease. They are watching her on that but had to find a way to add the TPN because Zoey needs to gain weight. They are hoping the liver disease fixes itself by removing the lipids. So the plan is watch and wait for Zoey to get to 2.5 kilos (roughly 5 pounds) so they can go back in with surgery to fix the obstruction and reconnect her bowels so her GI system is hopefully back to order and in working condition. The surgeon said they could talk and try to push Zoey to be transferred to EC but she'd have to get transferred back to Rochester for surgery and if there were any complications. We decided that it wasn't worth the risk and she might as well stay in Rochester, possibly for the remainder of her hospital stay.
Zoey has been doing well with her breathing and lung development. They switched her to hi-flow a few days ago and has been mostly on room air at 2 liters. This is what any of us would be on if we were in the hospital and needed oxygen. Today, they moved Zoey to 1 liter since she's been breathing so well. She has been on room air even with the change or just slightly above that only requiring a percent or two of help with her oxygen level. This is nice to see her doing well on one of her major organs that they were concerned about at birth.
Ray and I had a productive evening as well. We went and completed one baby registery tonight and will do the other one tomorrow morning before going to the hospital for the day. This is a major accomplishment since we have no idea what to register for aside for suggestions others have provided. We also are living 70+ miles apart half of our weeks so it's hard to have time to both be at a store at the same time to look, talk, and pick items we would like Zoey to have. Ray was tired of shopping before we were done and tried telling me the store closed when in fact it was still open for nearly 2 1/2 hours yet. There was a sales associate nearby so I asked when they closed. Ironically they are open until 11pm so I told him we had plenty of time to keep looking. The sales associate gave him props for trying.
The main goal for Zoey right now is ideally 30 grams gained per day. After one day with TPN added she gained exactly 30 grams. So for the next week, two weeks, three weeks, whatever it takes, we will just keep on keeping on and watching her hopefully pack on the grams or ounces every day.