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.

Zoey decides when everything happens

Things have been very interesting since Friday night.  We had just got done holding Zoey and as we put her back, it was obvious that her ostomy bag was leaking again.  Then, as the nurse and I were cleaning her up, the nurse noticed her intestine was pushing out at the stoma sight.  I swore out loud then apologized to the nurse for my language and she said it was ok since the same exact thought had just gone through her head.  At first, there was approximately 2 or 3 centimeters worth of her intestines hanging out of her stomach.  We asked the nurse if we should be concerned enough to stick around or head out for the night and keep us posted.  She said we could go because they were warned that might happen and there's not much they would do.  A short while later we got a call from the pediatric surgeon who said they put some sugar and ice on it to see if it would shrink back down and go back in some because by that point there was about 9 centimeters hanging out now.  By the next morning 9-10 centimeters was back out of her stomach.  It was very unclear what would happen in the next couple of days. 

Our only hope was that she hang on in that condition through the weekend so her surgeon could evaluate things on Monday.  Everything stayed pretty much the same on Saturday which was good to hear.  Within an hour of us getting to the hospital on Sunday, her surgeon walked in (on his day off) out of no where.  The pediatric surgeon had been keeping him updated and apparently he felt he needed to come in and try a procedure that he's only done about 5 or 6 times in his career.  Without getting too graphic, he used a gauze 4x4 square, a long cotton swab, and used those items to put the intestine back into her stomach where it belonged.  This was AMAZING and we couldn't believe what we had just witnessed (and neither could the nurse)!  While Zoey was pretty uncomfortable during the procedure which lasted less than 5 minutes, we could tell she felt better almost immediately after it was all back inside of her.  This is excellent since she hadn't been able to sleep in the last day or two much and she lost a lot of weight from lack of sleep, from dropping water weight from the TPN being removed, and from dumping due to the stress happening with her bowels.  The surgeon said he believes that when the bowel starts coming out in that way it means it's ready to be put back together!  YAY...such a great thing for us to hear!  While he doesn't feel it's emergent, and said he could do this procedure a few more times before surgery if needed, he reassured us that surgery would happen soon.  So I guess Zoey's little tactic worked pushing her closer to having surgery.


The Dr couldn't have come in and done this at a better time since my parents, Auntie Wendy, Uncle Jed and Denise were all en route to visit as well as my sister, Allison, shortly behind them.  Zoey was in a much better state for visitors (but would have lovingly accepted them regardless) and was resting comfortably when everyone arrived.  I truly think she loved all the new voices and loved the attention she got today from everyone.  She started doing her cute, coy things like smirking at things that were being said and opened her eyes for them too.  I LOVE that everyone made it to visit today after a loooong wait!

After all of Zoey's visitors left, we gave her a much needed bath after all of the ostomy bag issues and bowels hanging out the past couple of days.  This was also Zoey's first bath since her line came out.  She clearly loved it as always and looked so relaxed and exhausted that she almost fell asleep in her bath tub.  Not to worry, we held her head above water and made it through bath time. 

With Ray and I both working, we aren't always down in Rochester.  There also isn't quite as much changing daily like it was before when things were more critical (which is good) so there's not always something to write daily.  We know people are religiously following our journey so wanted you to know that we aren't just neglecting it, but waiting until there is enough to write.  Please bear with us in what probably seems like long lapses between entries at times.  We ask you all continue to keep us in your thoughts and prayers and love that we have such an amazing support system out there following all of this still.

On Saturday I also had my baby shower which was wonderfully put together by Allison and Janine.  While I felt guilty leaving Zoey in the state she was still in, I was pumped to do something a little out of the norm from work, drive, Zoey time, drive, work, repeat.  I was so excited to see everyone there who was able to make it and missed those who were unable to attend.  It was a fun time with a neat activity and Zoey and I were blessed with many gifts.  Thanks to everyone for helping make that a special day!!

From here, we hope her stomach holds tight and keeps the intestines inside until surgery.  What we really need is her to grow again and gain more weight this week since she dropped back down to 2.295 kilos in one day.  As I said goodbye to my little peanut tonight, I couldn't help but to start crying because of how amazed I am of her strength and perseverance.  I told her I was very proud of her and knew she wanted to come home soon and that we would do what we can to help her get there.  I asked her to hold on just a little longer and keep battling through until surgery.  She seemed so calm as if to tell me it was ok and that she'd keep fighting despite being tired.  We can't believe what she tolerates and know she has the patience of a saint.  I will likely fall asleep praying tonight asking repeatedly for her to have strength, to help her grow, and to give me the peace of mind that I need to get us through the rest of this.  We aren't sure how long she'll have to stay in the hospital after surgery but that should hopefully be the last hurdle to clear before we can take her home.  Then I think all she has to do is show she can feed and gain weight and we can take her home.  I can see the end of the tunnel, despite it still being in the distance, but it's there.

Zoey likes to keep things interesting!

Well, with things holding steady the past few days with consistent weight gain and nothing else changing much, Zoey apparently got bored and wanted to shake things up a bit this morning.  As with everything else, she dictates when things happen with her and today was no exception.  She decided she was ready for her central line to come out and so it did.  I noticed some pink fluid-like substance under her dressing where the central line goes in her arm.  I asked her nurse to look at it and she said it wasn't like that an hour and a half ago.  She called in the transport nurses who have more training with the lines who took one look at it and wanted the Drs called in to also look.  Her initial thought was that the lipids and TPN going into that line were now coming out from the entrance sight and possibly mixed with a little blood to make it pink in color.  The Drs came in and looked at it, and without hesitation said, "Take it out."  So there went Zoey's supplements...good news for Zoey's liver, bad news for Zoey's weight gain.  The nice part is there are hardly any lines connected to her anymore.  They will be closely monitoring her glucose level every three hours and give her more through a peripheral line if necessary for extra calories.  They are increasing her milk every 8 hours to get her up to the necessary amount so she's not getting dehydrated or under fed based on her current weight.  They expect her to lose some weight over the next few days, and by some weight I mean a lot of weight, since she's still 4 ccs/hour short on her feeding level.  Hopefully she can tolerate her feeds and gain it right back.  Another good part is that they are re-instilling everything that is coming out of her stoma so the concern with her dumping is not as high as it's been in the past since it'll just get put back in the bottom half of the intestines for further absorption.

Other than that, nothing much is new.  I did not disclose when her tentative surgery date was set for a few days ago which was good because it changed already.  Now with her probable weight loss, and then eventual gain, it's possible it could get changed again and only time will tell.  Once we are more firm on a surgery date we will let you know.  In the meantime, we could use all fingers and toes crossed and another wave of prayers for her to keep making progress with her weight so we can get her put back together.  She is looking happy and healthy and can enjoy her baths even more now since her arm won't have to stay out of the water with that line being out.  And I swear Zoey can already understand what we're saying and she has one hell of a sense of humor because the timing of her faces and smiles is impeccable and way too frequent to just be coincidental.

My cheeks look bigger and who's double chin is that?

Zoey is experiencing a lot more energy and I feel like I could tell that she was bigger after only a couple of days of not seeing her.  Was this because I knew she gained so much weight the other night or because she actually looked fuller?  One will never know but you can tell she's finally putting on weight! :-)  Her surgeon was happy to hear the reports that the re-instilling has been going well since he was on vacation all of last week and she's been tolerating the level they started her at.  He wants them to increase the amount little by little now and hopefully be re-instilling all of her output by the end of the week.  This will just contribute to her weight gain.  That being said, they also hope to increase her milk and decrease the TPN as we do this since she should be able to digest more of the milk and since this is the direction her stomach will need to go in the near future.  I sat holding her yesterday and prayed out loud with her for a while.  It's like we just talked to God and I said what we were thankful for and what we feel we still need help with.  I asked Him to keep watching over her and to help her through the rest of this journey.  I'm not sure if this was more for her or myself but I certainly felt more at ease after that.

They have also been keeping an eye on her central line in her arm since it's been in there for a while now.  This is what her daily IV supplements goes through so it's very necessary still but we're hopefully nearing the end of needing it.  The pressure on the line has been a bit erratic lately and we're hoping that doesn't mean there's a clot at the end of the line preventing stuff from flowing out of it.  They plan to do an x-ray tomorrow to check it just to be sure since they had to remove the first one from her leg for the same reason.

Zoey had a massive weight gain 2 nights ago but then didn't gain anything last night which was fine and expected. So we weren't sure what tonight would bring. She gained 115 grams tonight. YAY since 30 grams is still the goal! We are happy that the re-instilling seems to be working so well! She even had a little poop in her diaper so that means all systems are still a go. Her total weight is up to 5 lb, 2 oz so we crossed into new weight terriroty tonight! And if my math is right (no jokes) 6 more ounces (approx 180 grams) gets her to her minimum goal weight for surgery. We are very happy with all of this and things are moving in the right direction!!

The best part of today is that we feel there is some light at the end of the tunnel.  The reasoning for this...her surgeon has a spot on the OR table reserved with her name on it.  I won't say when it's going to be yet because it is very tentative and can change at any time if her weight doesn't keep going this way but there's at least a date set.  Then from there, it's just heal and grow until we qualify to go home.  So from here we hope and pray, and pray and hope some more that her weight gain continues in the right direction and that we can keep this date for surgery that has finally been set.  Tentatively.

Excited about Poooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooop!

Well the last 4 days have been a big deal.  Zoey has gradually went up weight every single day since they started her re-feeding & made several adjustments with her feedings/nutrients/upping & lowering etc, etc, etc.  Last night she went up 140 grams & is increasingly more & more active since her big day earlier this week with the poking & prodding & testing.  Docs & nurses are pleased with this growth once again & this sloooooooooooooow climb towards 5 pounds & the eventual surgery.  The reason for the title is Zoey has had 3 poops, the first time she's been able to since her surgery & being unhooked 2 & 1/2 months ago.  This is a big deal for her & her progression.  While it's not much that they're re-feeding, it's proof that we need that her lower intestine & all the intricate parts down there are working, at least to some degree.  While we don't know what things will look like once Zoey goes in & then out of surgery, this is a positive to be happy about that hopefully will be one step closer to getting Zoey home. Seems like there was a lot of days we never knew if this could or would ever be over.  Fingers crossed again.

Thank You St Pauls Lutheran Church

Sally & I greatly appreciate Sally's church & it's members from back home in Minnesota, where her family has been attending for 3 generations, for creating a donation & fundraising effort for Zoey.  They have taken the initiative to help with many of the bills that have & will pile up for Zoey in the immediate & uncertain future.  They have asked for us to post the link in the event that anyone may have any interest in this.  Sally & I haven't been one's to ask for help often so this is a very grateful & emotional post for us.  One truly doesn't feel the impact of a massive life event such as this until you're in the middle of it.

Their message:

It is with faith and joy that we, St. Paul's Lutheran Church invite you to donate on Zoey's behalf. With your help Sally and Ray can concentrate on their beautiful baby girl.  

You can click on the link, again, if you feel you are able to help Zoey in any fashion.

https://fundrazr.com/campaigns/9TTse

A busy couple of days leaving us with optimism

Heading out of the weekend, we knew Zoey was going to be busy this week with a couple of labs, her post-surgery eye exam, and her 2nd contrast study of the lower portion of her bowel.  Ironically almost all of this happened on Tuesday.  She started out with a heel stick to test her glucose level, then had her eye exam while stopping feeds for about 4 hours, then went straight into having the contrast study done, and 2 rounds of x-rays after that throughout the afternoon and evening.  Like always, she was a champ and took it all in stride and did well through it all.  This left her feeling VERY tired and she slept the rest of Tuesday night and has been asleep all of today for the most part only waking up for a short time during her cares and her bath which she enjoyed as usual.  She also had blood work done this morning to check her levels and her direct bilirubin level seems to be just a tiny bit lower than last week so they have been managing it well.  That being said, they decided to increase her TPN and decrease her milk so she's getting them at a 50/50 ratio which is a slight step in the wrong direction and increases the risk of more liver damage, but it's what she needs right now to gain weight since we hit that wall at the end of last week.  The past two nights she has had a 10 gram and 20 gram weight gain so I'll take that since we were going negative in weight before this.  It's possible she might lose some tonight since she had her feeds stopped yesterday for so long, but maybe her body is truly absorbing the milk more since they have her on much less than what she was used to getting.

Oh, you wanted to know the results of the eye exam and contrast study?  The eye exam shows that the right eye has a "little angry spot" still but overall they were pleased with how both eyes look from the report I got.  They will re-check them in another 10 days.  This does not mean that she won't need cataract surgery later or won't need corrective eye wear as a little girl, it simply means it went well and she's probably not likely to have retinal detachment anymore so that's very good news.  No going blind right now for this girl!

And we are very pleased with the contrast study.  On Feb 26 she had one done and it went about 15cm before they had contrast coming back at them which meant there was an obstruction.  Her contrast study on Tuesday (a little more than a month later) showed no obstruction and that the contrast was able to go all the way through the lower part of the bowels.  Sometimes, they just clear up themselves and we are very fortunate that this was the case for her.  She may still need a little fixing of some unhealthy parts (which they'll determine when they go in and put her back together), but overall this is great news because they can start re-instilling some of her output from the ostomy bag back into the bottom half of the bowel to get it used to working again.  It will remind that part of her bowel how to work but also will give her body a chance to absorb more from the milk and hopefully help her grow!  They are starting out with 2ccs put in over 2 hours and only twice a day but it's going to be a slow and steady process and if she tolerates it they can push it a little faster.  The eventual goal is to have a continuous flow of everything from her stoma going into the mucous fistula (this is the end of the top of her intestine and the start of the bottom of her intestine).  I told her today that now she has to Grow Zoey Grow!  No pun intended but hopefully the scales have been tipped in her favor again and we can continue with the progression on the long road towards home.