Home from the hospital

This morning went pretty smoothly with getting things done and getting ready to leave the hospital this morning.  Some people from Peds surgery came by around 6:30a and looked at her surgery site and said it looked great.  We all went back to sleep for a little while.  That was the nice thing too, being able to sleep in her room since that was not at all possible in the NICU due to space constraints and their overall set up.  It was comforting being near her all night!  So...back to what I was saying before...we all went back to sleep and woke up around 7:30a.  I got a bottle ready for Zoey to eat and Dad changed her diaper and watched the nurse do her overall assessment.  We asked there were any expectations for the day that the nurse knew of.  She said just wait to get the ok from the powers that be that we can get out of here.  Around 9:00a, Dr. Ishatani (her surgeon from yesterday) and Jackie (the Peds NP) came in and looked at her surgery site as well.  They were both really pleased with how it looked.  Jackie showed us basic site care and warned us of things to looked for and told us to follow up in a few weeks when we come back down for Zoey's hearing test at the beginning of October unless something came up sooner.  Zoey was all back to her normal self when she woke up this morning and didn't mind it one bit as Jackie pulled the packing out of the site and put more in.  Of course, she wanted to help Jackie by having her hands in the way but we needed to keep her little fingers out of there so she wasn't sticking her fingers into the actual site itself since it's still open some.  Zoey was such a good girl though all of it though! She also hadn't gotten any pain medication since the night before and seemed to be doing well.  She was great while we packed up and slept the whole way home.  Overall, that was about the best trip to the hospital we could have asked for.

Before we actually left the hospital, we swung over into the NICU to see some of our nurses and doctors who worked with Zoey so they could see her progress.  I think we really made their day, but especially one of her Drs, because in true Zoey fashion, she worked the crowd and smiled soooo big at him when he said Hi to her.  Apparently he was having a fairly stressful morning and he said that just completely made his day!  She really seemed to like him and he felt it!  The best part for me...everyone kept telling us how big she is and it's nice to hear that since everyone else in the world loves telling us how cute and little she is.  My response soon will be "No, she's a giant!" since she is compared to how tiny she started life.  It's all a matter of perspective and I realize that so I try to just smile and silently agree with them, but most really have no idea how far she's come so it's nice to be around those that do sometimes!!

Surgery #4

This morning started very early as we needed to leave the house around 5am and my Mom met us down there.  Thankfully we were the first case for the day so they took Zoey to the OR around 9:45am.  The surgery took less than an hour from start to finish and we were back in the recovery room with her around 11:15am.  They were able to extubate her right away unlike the other surgeries.  They said she did very well and apparently there was no shortage of people wanting to hold her.  They said "Her face is so sweet...everyone just wants to hold her!"  That was comforting at least.  The surgeon said he stitched her stomach lining shut after removing the scar tissue and stitched it with a double layer or something to that effect.  He literally said "Then we put that back in her and moved to the abdominal wall."  That was a lovely picture.  He went on to say he only put 2 sutures on the abdominal wall after removing the scar tissue there.  He said this would leave a bigger scar in the long run but it allows any germs and potential infection to get out before it starts healing from the inside out and from the sides inward.  He said she could later have plastic surgery if she really wanted to be an Abercrombie & Fitch model later in life like her Dad (HaHa!) but he said she's had so many surgeries on her belly that she wouldn't likely be a model without some scarring.  I guess time will tell what she chooses to do there.

We only sat in the recovery room for about 15 minutes because she didn't require oxygen, had good color, and was waking up pretty well overall.  We took her back upstairs to her room for the night.  She and Daddy took a snooze for a little while after getting back up there.  Then she woke up and remembered she was practically starving since we hadn't let her eat for about 10 hours.  She took an ounce, then another ounce about 15 minutes later, then another ounce 10 or 15 minutes after that, then another ounce.  Then she laid in my arms comfortably until I moved her and Blllaaahhhhh...she threw most of it back up.  We think the combination of anesthesia and the motrin they had just given her was enough to make her sick.  She fell asleep for a while and we went to lunch.  When we came back we tried to have her eat again and she took 2 ounces and fell back asleep.  She doesn't seem to be in too much pain right now and while we were gone the nurse gave her more motrin since she probably puked up most of the last dose.

We will just hang out in here for the night and hope to go home in the morning.  From the sounds of it that's pretty realistic since she has done very well so far.  Thanks for all the prayers and well wishes!!

I tried to add some photos but it wouldn't let me :-(  I will have Ray try so keep checking back!

NICU clinic follow-up

The past month has gone by so fast since my last update.  My apologies for not getting any pictures up but I will make up for it!  On the 9th of this month Zoey turned 8 months old but also hit the point where we've now had her home as long as we had her in the hospital (exactly 4 months at each place).  That is a great feeling and feel like another milestone somehow.  She's also learned how to roll over, can almost sit up totally with her own strength, has discovered her feet, and loves to stick out her tongue.  We also have heard her giggle a couple times which completely warms the heart!

After LOTS of searching, I was also able to find a nanny for this fall and winter.  This was an exhausting process but it all worked out in the end as I knew it would.  We still keep our first nanny on a few days a month so Zoey remembers who she is.  I had so much anxiety on the new nanny's first day with her, but she seemed to be capable and caring and asked questions when she had them.  I still don't like change it turns out.  But we're adjusting and things are going well with it.

This past Tuesday we went back to Rochester for her big NICU clinic follow-up day.  The NICU does this with all prior NICU families to help monitor and catch if there are any issues that arise and need to be addressed.  They give preemies 2 years to "catch up" both in size and in cognitive development.  We met with a nutritionist, an occupational/physical therapist, a social worker, and a doctor that morning.  It was set up very efficiently because they put you in a room in the morning and all the different providers rotate through the rooms of families.  All went well and they were very pleased with her progress overall.  They said she's right on pace for her gross motor and fine motor skill development and is tracking and watching things the way she should for her adjusted age.  Despite some issues with feeding recently, the nutritionist was also happy with her weight gain since it had been exactly 2 months since her g tube was removed.  She said just to keep feeding her and told us ways to start working her off the overnight feed since we're down to just one now and when we can start the rice cereal.  She now weighs 11lbs, 10.5ozs!  She seems a bit more responsive to hearing things on her right side than her left side so as a precaution we're going to have a hearing test done in the beginning of October just to check since issues with hearing can also be a side effect of prematurity.  The Dr wasn't overly concerned with this since he was pleased with the range of noises she was making but said it doesn't hurt to do one to see where things are at.

The only real issue we had going into the appointments was that her g tube hole is still open especially since it has been exactly 2 months now.  Fortunately they were able to fit us in to see the nurse practitioner in Peds Surgery and it also happened to be the NP that has followed her case the whole way through.  She took one look at it and said "It will never close unless we do something" to which I responded "And that something is...?"  She said there's too much scar tissue built up around that g tube hole and in the stomach lining preventing it from closing and it will need to be cut out.  We then sadly found out that Zoey's surgeon left about a month ago to Iowa and we'd have to pick another one.  Nooooo!  We're hoping everything goes well with it since he's not familiar with her case but it sounds like they were still going to consult her original surgeon prior to surgery since he knows her inside and out...literally.  Apparently they still won't stitch her shut, just remove all the scar tissue.  They want to still let her heal naturally and say that it should once the scar tissue isn't there preventing that from happening.  So this coming Tuesday, she will have surgery #4 under her belt.  Thankfully this should be the least invasive but we still pray all goes well!  We'll give an update after surgery when we can to let you all know how it went.  Prayers are welcome!

Sunday School kids are Amazing!

A VERY HUGE THANK YOU to all the Sunday School kids and their families for bring in offering money over a pretty long period of time to be donated to Zoey and our family.  I remember many years ago sitting in the West Wing and other areas of the church attending Sunday School for my whole life until I graduated from high school.  What a special and generous thing for you kids to do!  I'm so thankful that the Sunday School kids of St. Paul's are still learning about giving to others as I remember doing that very thing and bringing food items, money, and other things for people in need when I was young.  There just are not enough words for the kindness St. Paul's has shown us throughout this journey!  Thank you, Thank you, Thank you!

Still growing

Over the past month, Zoey has continued to grow.  We just went to the Doctor yesterday to get another immunization and some follow up lab work done.  She weighed in at 10 lbs, 13 ounces.  They are happy with her progress there since she is finally on the growth chart in the .01 percentile for her weight.  Her lab work looked great too showing progress in all areas related to her liver functions.  Her bilirubin level was also much lower than a couple of months ago and has stayed down around .3 so that's great improvement also.

The spot on her tummy is still working on healing.  Some days it looks like it's closed then other days it appears to have opened up again.  It doesn't seem to bother her for the most part so we'll just give it time to do what it needs to do.

Overall, Zoey still acts like a happy, healthy baby.  This past week has been a bit of a struggle with lots of crying and just overall not being content.  We've tried many things trying to figure out what the cause is since she's normally so calm.  We've adjusted her feedings to less milk but a little more frequently and that seems to have helped some.

She never ceases to amaze us and continues to do things like try to stand on our lap with little support.  She likes to grab things and bring them to her mouth now and even got her pacifier back into her mouth the other day all on her own.  We love seeing her develop and learn new things.

We had our NICU reunion a couple weeks ago.  It was nice to see many of the nurses that worked with her.  It was funny because they laughed and said they didn't know how to hold her wiggly butt now because she was sooooo big!  That's literally the only place we'll ever go where they will tell us she's big. :-D  It was a nice time though and we saw some of the families that were there while we were so it was neat catching up with some of them as well.  We also left feeling very blessed (not that we ever didn't) because there were so many kids that live every day struggling with different things and then there was our little peanut just being her sweet self.  We were reminded how fortunate and blessed we have been through all of this.

Zoey is now just over 7 months old.  We are trying to find a nanny currently to keep her out of daycare until her immune system can build up some.  This is proving to be quite a task because we don't want to leave her with some inexperienced young person.  The reference checks have been heaven sent so far as lots of things have come to light making me not want to hire some.  Thank goodness for honest people!!  But we're hopefully coming closer to finding someone because we're quickly running out of time.  I have faith though that we'll find the perfect solution and it will all work out in the end.

We have our big NICU follow up clinic day in a little less than a month so more updates to come then.  Thanks again for all the continued thoughts and prayers.  I will add some pics to this soon!

G tube removal

Zoey has been traveling lots visiting family and friends and has had numerous lunch/dinner dates meeting many, many wonderful people.  We also had some excitement a few weeks ago when her g tube popped out in the middle of the night because the balloon had a tiny hole allowing the water to leak out no longer securing it in place.  I have no idea how I remembered to change it but I was able to get the new one in despite being the wrong size.  I called Rochester after the fact to make sure we didn't need to go down there at all but they said everything sounded ok and that I should have the right g tube sent and then just replace.  I was more nervous putting the right one in a day later but that was probably because I had time to think about the process instead of just reacting.  It amazes me how someone (me) who could not stand little incisions and minor medical things a year ago has gone through this and is doing things like changing g tubes and such.  Crazy how being a parent changes so many things including your ability to not pass out when you see blood, incision sites, part of your insides, etc.

Yesterday Zoey turned 6 months old and marked the 2 month point of her being home.  Today Zoey had her 6 month well check appointment and got a couple more immunizations/boosters.  She did not like these as much this time compared to last time.  This only started her big day and the pediatrician was pleased with her progress.  She weighed in at 9lbs, 4 ozs and is consistently gaining about an ounce a day which is what they wanted of her since she came home.  We go back in a month for one more booster shot, follow up lab work to make sure her liver functions still look good, and a weight check.  We also have a follow up day with the NICU in Rochester which is standard for all families who leave.  This is not until September so Zoey's list of appointments is next to none now.  One step closer to normalcy and just living life.  

Today marked another big milestone!  We also had an appointment scheduled with Peds surgery here in Eau Claire.  This was the one day a month that they travel up here to have appointments.  I scheduled this appointment a few weeks ago in hopes that she would get her g tube removed.  It was not until we were sitting in the exam room  that we found out they would actually remove it today.  We were sooooo happy to hear this as we have not used it for 6 weeks to the day.  I'm not sure why we had an appointment for this really because all they did literally was take the tube out and put a piece of gauze over the site.  I could have done that. :-D  They advised us that it would leak a lot for the rest of today, then would be about the size of a pin hole the next few days with the leaking considerably less, then would be all closed up.  They gave us some gauze, some tape, and sent us on our way.  I honestly think that she knew that was the end of her g tube days because once it was out, she looked at us, we told her that was it, and then she laid there and just smiled.    It was such a great moment!!!  This is the first time in her life that she has been tube/line/machine free...100%!

Every day Zoey is looking and acting more and more like a "normal" baby.  We know she's anything but "normal" and is very special but she's learning to hold her head up, is smiling, is making cooing noises, is fussing from gas or hunger, all sorts of things other babies are doing.  Today felt like such a liberating day because it means we can do more normal things like tummy time with Zoey now.  I can hold her facing me without worrying her tube with be pulled on and leak.  I don't have to be careful lifting up her onesies at every diaper change for fear of pulling out the tube.  These are things that many people take for granted, but we've had to be aware of many little things like this for what seems like a long time.  We are extremely looking forward to the coming days and weeks to watch her keep growing, changing, learning, everything!

These last two pictures are Zoey with no G tube!

Again we thank everyone for their love and support & thoughts and prayers through all of this!

Monday's GI follow up

Zoey and I took a trip down to Rochester again on Monday for her follow up appointment with the GI Doctor.  She looked at her labs from the past month and decided to discontinue her meds to help her liver.  After more blood work, her bilirubin was down to 1.2 so a little higher than they'd like but figure over the next month or two that it'll resolve itself the rest of the way.  The Dr felt this would be better than continuing her meds for a couple of weeks since she's so close.  They'd like her bilirubin below 1.0.  She also looked at the ultrasounds that were done last week.  There's a little spot on her liver which she chalked up to a little birth mark that will go away over time.  It was 4mm a couple of months ago, and was 3mm last Wednesday.  She suggested just having an ultrasound done in 6 months to a year to check it again before putting the issue to rest and also just for peace of mind.  GI doesn't really even need another follow up appointment, just blood work done here in a month or two and another ultrasound done in 6 months to a year.  So that was really great news and the Dr was extremely pleased with how she's doing!

Zoey is still doing well with oral feeds.  She's becoming more alert and really loves looking at stuff.  She just love taking it all in and really examines people and places around her.  And she LOVES and really responds to music.  Oh, and I almost forgot...she was weighed again and came in at a whopping 7lbs 2 oz!  That is an ounce a day weight gain since Wednesday so I think the new feeding schedule they gave us is really working.  And we're noticing these little chipmunk cheeks coming in too!  The g tube does better some days and leaks other days so that's still frustrating.  July 10th can't come soon enough! :-)  However I'm in no rush for the days to go by because I have to go back to work in less than 2 weeks and am dreading it.  I wish I could stay home forever with Zoey!  But that's not possible for now so just something I have to deal with.  Just soaking up every minute with her until then!

Follow up day in Rochester

Zoey has been very busy over the past few weeks.  She's starting to smile and loves to interact with us face to face and is responding more and more to our facial expressions every day.  She has also been doing some tummy time (the best she can with her g tube) and is working on building her neck strength.  Sometimes she's kind of a show off with this because she pretends like she has no muscle strength and then the next day blows us away and shows us how strong she really is.  She's looking less and less like a bobble head every day.
 The last week in May, we decided to try a bottle feed for the first time since we have been frustrated with the g tube leaking.  Our thought was that the less we use it and move it, the more the skin around it can stay snug and therefore decrease the amount of leaking.  So while out to dinner with my parents, I (being a first time parent) decided it was the appropriate place to try a bottle feed for the first time because everything would go perfectly.  My Mom thought I was crazy!  So we tried it and she didn't even hesitate and took the bottle like she had done it a million times before.  She even sucked down 2 ounces of milk in less than 5 minutes.  So it was not surprising that she spit up a little but surprisingly kept the majority of it down.  Since she just opens the hatch and chugs her feedings down, we have to stop her every half ounce or ounce and burp her and make her take a break and breathe a little.

And now onto the medical updates, Zoey's bilirubin had decreased from 6.3 to 3.5 in a week and then down to 1.5 the next week.  These are HUGE decreases in that period of time compared to how it normally had been decreasing.  This is now back to a normal range and we follow up with GI this coming Monday to see if she can discontinue the meds to help her liver catch up.  She had an ultrasound done of most of her major organs in preparation for this GI appointment.  As I mentioned a little already, her g tube has been a point of frustration despite being a great thing in the beginning and allowed us to go home when we did.  We haven't used her g tube for a week and half now at all with the exception of giving her meds through it a few times.  We followed up with her surgeon and he gave us some tips to help her skin feel better around the g tube and inflated the balloon more that keeps the g tube in.  The next day it was clear that this was helping since the leaking had decreased a LOT.  One variable we cannot change is that her car seat pushes right on it so it leaks whenever she's in it.  So we just plan ahead and pack extra outfits.  The goal is that her g tube can come out in the beginning of July if she gains enough weight over the next month.  We met with the nutritionist who adjusted her feeding amount and schedule to help her with the weight gain.  It was an increase of an ounce per feeding which might not sound like a lot but it is for this little girl.  She handled the increase well and continues to chow down.  Her most recent weight was 6 lbs 12 oz.  We are hoping for a 1 1/2 to 2 pound weight gain over the next month to get the tube out.

We also met with the opthamologist who did surgery on her eyes towards the end of March.  A few weeks ago, he said that the right eye was fine and we were watching 3/4 of the left eye still.  On Wednesday, he said that they were all healed fine and we didn't need to follow up again for another 6 months, then not for another 2 years if all remained fine.  This is great news for now and we could tell she was doing better because she was tracking more and has been very alert looking at things.

Her pediatrician suggested that other than building neck strength we should try to get her to look to her left more.  Her bassinet in the hospital was set in a way that made her look to the right all the time to the rest of the room so that is still her preference.  So now we've changed how we lay her in the crib and on the changing table to encourage her to look to the left more.  She's getting better each day and the occupational therapist said she has good flexibility with it still and that we're doing all the right things to help her learn to look to the left.

Overall Zoey is doing very well and loves being at home!  We spend lots of time snuggling and I love being off work with her.  We went to my Mom's work last week to meet everyone who had been watching her journey and spent 4 1/2 hours meeting everyone.  She was such a trooper for such a long meet and greet!  She has also met many other friends and family in the past couple of weeks.  She is a good shopper and doesn't mind being in the vehicle riding around.  Zoey also rarely cries except for when she's hungry, gassy, needs a diaper change, or is all wet from her g tube.  This makes being a parent pretty easy!  We count our blessings everyday for how well she's doing!

Adjusting to life at home

Over the past week and a half we've been adjusting to life at home with Zoey.  It's been some work getting a schedule down at home because she started out being a party animal at night.  Zoey started out having awake times from 11p-4a or midnight to 5a the first few nights but we worked on keeping her awake a bit more during the day and wearing her out so she sleeps at night.  I think (knock on wood) that we've fixed that issue since she seems to be sleeping better at night now.

Overall, Zoey is such a good girl and really only cries when she's hungry or wants to be held.  She's still enjoying her bath times and is doing well with nursing and feeding.  Zoey gained just 2 ounces in the first 5 days being home since we increased on oral feeds so much.  This past week we increased the tube feeds some and she gained 5 ounces which is on the low end of what they want but still acceptable for weight gain.  This puts her at 6 lb, 6 oz now as of today.


Zoey's had a few doctor appointments also in the past 12 days.  The first was her pediatric appointment with her new primary doctor in Eau Claire.  This went well and was mostly a "get to know you" session and to get her weight.  Zoey was under the preemie curve for height, weight, and head circumference but still following the curve so they are happy with that for now.  This week she actually made it on the very bottom of the chart for head circumference despite height and weight being low but following the curve.  Blood work was done last week and this week and is showing a decrease in her bilirubin.  Between being home and being on meds, her liver seems to be improving slowly but surely.

We also went back down to Rochester last week for a follow-up eye appointment.  The Dr said he was happy with how her right eye looked which is great since that's the eye that made them want to do surgery in the first place.  Three-quarters of her left eye looks to still be healing so they'll keep watching that and we'll follow up again the first week in June.  Good thing we were there that day because her G tube had started leaking the day before.  All the NP did was inflate the balloon a little more and gave some more tips on keeping the skin healthy and not irritated around the tube and boom...it was fixed!  So glad we were going down there so that it could be resolved so quick since she was losing a lot of milk pouring out of there.

Overall, things are going great!  We were happy to have Zoey home for Mother's Day and my birthday a week later.  It's been nice just to spend so much time with her and together as a family.

An overdue Thank You

With everything coming together so fast recently and trying to prepare for Zoey coming home, we failed to give thanks for many people's generosity.  As most of you know, St. Paul's Lutheran Church in Osseo, MN, wanted to do something to help us through this time.  It is the church I grew up going to and that my grandparents attended and parents still attend for many years.

A special thanks to Brian and Jenny Hines for organizing and making the fundraiser website for donations.  Thank you to Carol Emmans and the rest of the Church Council for thinking of having this fundraiser, contacting me about it, and putting it together for the month of April.  And a HUGE thank you to the congregation of St. Paul's for their generous donations of money, gift cards for gas, and a few other gifts with special things for Zoey.  The money will be used for hospital bills, items that Zoey needs, or maybe it can simply be saved until she needs it for something else.  We were blown away by how generous people were in their donations and thank you immensely from the bottom of our hearts!

Home Sweet Home

Well, if the title didn't give it away, Zoey is FINALLY home!!!  As of May 9th at 3:04pm, we were loading Zoey into our vehicle in Rochester and departing for home with her.  My sincerest apologies for not getting an update done yesterday, but as you can imagine, life was very busy getting her home and settled and it is very different having her here and being up feeding her around the clock every 2-3 hours. 


In the beginning

In the end

Things kind of fell into place very quickly with taking her home.  This past weekend, some conversations started about us going home sooner than my birthday which was the most recent goal for departure.  Then Monday morning in rounds, the Neonatologist and Fellow basically helped figure out what needed to be done before we left for home and gave specific people to-do lists to make sure certain things were being taken care of sooner than later in case there were any glitches so as not to delay our departure.  Originally they had said by the end of the week we could probably leave, then on Tuesday they said we should "room-in" on Wednesday night.  This meant that we rolled her into a private room with no nurses or anyone and tried to do everything on our own with her.  Zoey decided she wanted to start celebrating early and was up from 11p-2a and would not fall asleep.  I checked everything I could think of to make sure there was nothing else wrong other than wanting attention or just that her sleep schedule was off but I really think that's all it ended up being as she did the same thing the next night.  Despite her not sleeping and keeping us up most of the night, we felt like things went well and we were able to handle feedings, meds, diaper changes, etc.  They checked in with us Thursday morning to find out how we felt and said if we thought we were ready then we could leave Thursday otherwise we could room-in one more night for more comfort and confidence if we wanted.  Since we felt things went well enough, we decided to tie up the rest of the loose ends and left.

With taking her home, we also said goodbye to the Ronald McDonald House in Rochester and moved out.  It was bittersweet since we've gotten to know some of the staff there and they were sad to see us go but obviously really excited for us too and couldn't have been happier we were able to leave.  I packed everything up and brought a vehicle full home on Wednesday evening, picked up Ray, and headed back so we only had one vehicle in Rochester when it was time to leave.

Many of the nurses who have worked with Zoey at some time during her stay were coming around to say goodbye throughout the week.  Also, nurses were coming around to see us and wish us luck and assure us that we'd do just fine at home and were ready after everything we've been through.  Many of them said "You've been here long enough...now it's time to go home and enjoy being parents."  We were also encouraged to come back to their yearly reunion gathering they have every August that NICU families are invited back to for 5 years so they can see the kiddos and how they've grown.  We assured them that we'd make it back for that.  While we butted heads with people and didn't always see eye to eye on things, it was very evident that they all really cared about Zoey and us and were sad we'd be gone but thrilled we finally got to leave with her.  While I was excited to leave, this too was bittersweet for me since it's been a big part of our lives for the past 4 months.  We want to thank all of the NICU staff who we worked with as we couldn't have done it without you!  And thank you for putting up with us as you knew our frustration was only because we wanted what's best for Zoey.

In the past 24 hours, we've already started to form a bit of a schedule but I try not to think of what it will be like when I have to go back to work.  Hopefully we've transitioned to all oral feeds and no G-tube feeds, and have been able to introduce bottles by then as it should help.  We can't wait for so many of you to finally be able to meet her.  The Drs said that we still have to be careful with people touching her a lot as she will still be very susceptible of getting sick more easily so please don't be offended if we're still protective of her and hand you a bottle of hand sanitizer.  While I hoped Jan 9 through May 9 would go by very quickly, I now hope time slows down especially over the coming weeks that I'm off work with her and of course the many years to come.

We want to thank everyone for their continued love and support through all of this.  The blog updates will continue but with much less frequency and probably only after we have follow up appointments or when there's something big to update you on.  We hope the rest of her life is much easier now and pray for continued improved health! Thank you to everyone and we're so excited to be living a "normal" life now with our precious little girl!

Such a big girl!

So much has happened since my last post 5 days ago hence not having time to type updates. After I left the hospital the other night after the snow storm the stars started to align with various things.  Zoey was taken off the antibiotics, which I felt was a little quick, but I don't have a medical license and things have been ok since.  Her incision site is looking better.  The incision itself is healed and the spot around the g tube is getting better.  It's still red but not oozing as much since using a zinc oxide cream which acts as a rain coat for the skin so the moisture doesn't stay there.  It seems to be helping overall.  Then, since the antibiotics were stopped, they figured the PICC line, which was that catheter inserted in her neck, was removed since nothing needed to go through that anymore and all other medicines were being administered via the g tube.  YAY so one less line now!  All she has is the leads measuring her respirations and heart rate and the line measuring her oxygen level.  So much more manageable and really makes her seem like a big girl.

We still haven't passed into the 6 pound range yet, and her weight either went down slightly or stayed the same over the past few days, until last night when it increased again finally.  They aren't too concerned with this since they changed her feeds to every three hours from continuous and every 2 hours.

Oral feeds haven't been going quite as well so we'll be working with the lactation consultant tomorrow to figure that out.  Time will tell if we'll end up switching to bottles for oral feeds but for now everything is going through the g tube.  A pharmacy brought supplies for that so we could start learning how the equipment works since we won't use the pumps from the hospital at home.  There was a lot to learn but very easy once you've done it a few times.  The gravity feed bag is a bit more complicated than it seemed it should be so they will be looking if there's something else otherwise we'll just use a pump so we know the rate and don't upset her little belly.  It's nice to be getting practice on the things we'll have to use whenever we make it home.  Considering her very complex journey, I'm so grateful this is the only equipment we'll need and probably not for very long.

Despite me working this past weekend, my Dad was generous to come and help finish so much around the house.  We got the wall boarder and decorations put up in Zoey's room, we did LOTS of cleaning (and this was mostly just Dad while I was at work), and he tied up some loose ends like cutting up wood from the storm last year, washing screens and windows, fixing the window cranks, and tearing apart the washing machine since Ray got black dye in it that wouldn't bleach out (long story but it's fixed now).  This was SOOOOO appreciated that he came and did this for/with us because it lowered my stress level significantly and I don't think I would have gotten all of that done without him!  Thanks Dad!!!  And thank you to everyone else who has helped along the way whether it was sending a card, sending a gift, writing well wishes on one of our sites, visiting at the hospital or anything else...it was all noticed and all VERY appreciated!

In addition, we were able to purchase the remaining items from our registry that we needed for Zoey.  This was fun but we racked up a big bill in a very short amount of time.  But now I feel like we have what we need and we won't feel like we should have gotten something when we had the chance.  Overall, it feels good getting so many things checked off the to-do list.  And Zoey is doing great and that's the biggest thing that matters. 

Snow in May?!

Luckily I was down in Rochester before this snow storm hit but I'm hoping to make it back to Eau Claire tonight.  Zoey has no idea what she's missing out there but I think she's just waiting for the warm weather to move in and stay in.  Might be good that I'm heading back to Eau Claire, because we didn't have any power at RMH this morning.  Who knows when they'll get that back.

Yesterday the cultures came back with a third strain of infection at her incision site and where the G tube is located.  They have also started her on a 3rd antibiotic to prevent any fungal infection or problems in her lines.  While the redness is the same as yesterday, the oozing is a bit more but they said it's all still looking good since it's overall not worse.  We just have to keep that site as dry as we can to help it heal.

Today they are going to switch her to a new pump since she has too much milk to fit into the syringes anymore.  It's called a kangaroo pump so I'm glad that we're sticking with the comforting kangaroo theme here.  It may be the type of equipment we bring her home with to feed through her G tube to it'll be nice to have some practice with it ahead of time if that's true.  They are also changing her feeds from continuous to every 2 hours today.  I think she'll be one cranky baby later, especially since I won't be here for her to try more oral feeds when she's hungry.  And if that goes well she might be switched to feeds every 3 hours which is apparently pretty normal for babies.

Zoey's getting bored

So the past few days, the nurses are starting to think that Zoey's getting bored as she's moving all around and crying more, yet is consolable when held.  And after her little wiggle butt decided to try and scoot out of the bassinet, they've moved her back into a crib with taller sides so she cannot escape.  They also have surrounded her with things to look at to help with the boredom and provide some mental stimulation.  She wonders why they put another baby in her crib but I've tried explaining it's her reflection in a mirror.  I don't think she's buying that explanation yet.


Zoey has been fighting 2 different infections at her incision site from her most recent surgery.  They luckily caught it early and have her on 2 antibiotics.  It is no longer oozing and is less red after about 4 days of the antibiotics.


She also had 5 days of steady declines in her weight but gained a decent amount last night so we think her body is adjusting to the way her body is getting her fluid intake and they added the prolacta back into the milk as well to help her.

The debate has started again as to whether we should have her transferred back to Eau Claire or not, but with this new infection issue, we're staying put.  Once she kicks this infection, we can start working on switching her feedings to every 2 and then 3 hours so that will get us closer to going home at which point a transfer wouldn't be needed.

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