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.