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!