Day 19…

With all the interventions recommended, we did everything possible to give our daughter the best chance at thriving to overcome odds of her developmental delays.  We started speech therapy and occupational therapy and she is making amazing strides there.  She has been caught up to a 2 year old level in speech and working on her preschool skills.

img_3324.jpg

With the amazing support of Lew’s parents who watch her most days, she attends book babies at the library and we also take her to KidStrong which has been an unbelievable gift. She will also be starting preschool in the fall a couple days/hours a week and we are excited to see how the enhanced social skills will help her language and development.

IMG_3503

We know that there are lots of other needs that many other preemies have to have and we are grateful that our girl has such an amazing support team and resources.

 

 

Advertisements

Day 18…

When June was close to being discharged we learned more about the NICU Graduate Clinic that would be following her growth and development during the first three years of her life.  Knowing that premature infants have a higher risk of developmental delays, the graduate clinic would track her developmental markers, but also give us insight into how her eating and growth was going, and how her saturations were off the oxygen and when we need to discontinue the monitor.

Screenshot 2018-05-18 at 8.51.49 PM.png

One thing as parents of a preemie we had to quickly learn was June’s actual age vs. her adjusted age.  Since development begins at conception, not birth, June’s adjusted age is based on her due date and her actual age on the day she was born. Ideally preemies will catch up developmentally by three years.  The NICU would do several developmental tests each year to track how she was progressing.  In the first year, she would be seen at 3 months, 6 months, 9 months and then at 1 year adjusted age, which was in April, for her first developmental test.

Her first visit was right after my first Mother’s Day and the first person who walked in was someone I knew you from church and had seen the video of our story and even said to herself, “I bet I’ll be seeing her soon.” She was June’s Physical Therapist and gave us some suggestions on how to help with some low muscle tone issues June was experiencing.

Screenshot 2018-05-18 at 8.34.28 PM

We saw a dietician who helped us review the formula and breastmilk regimine June was on and made sure that she was still on her own growth curve.  Being worried about her weight constantly and wishing she could just be on breast milk was such a source of concern and anxiety, especially with the rough bouts of silent reflux.  Even though it was May, we were still doing everything we possibly could to keep her healthy.

We then met with our APP, Kate, who we also discovered later went to our church. We are so grateful for strong relationships with some of these folks who have supported us and continued to celebrate June’s growth.  We went back a few times that first year for follow ups on oxygen and the monitor as well as closely watching her need for continued PT services and always paying attention to her nutrition and growth.

8216A4FF-DE19-45D4-AC9E-6148FD6D139A

We had another visit in the fall and then she had her first developmental test at which she did sooo well!  Of course we were super nervous but she was awesome and met all the markers to be on track for a 1 year old born in April of 2016.

But of course, the following year, she would be tested in February and while we had an amazing year with lots of growth, development and intervention (more on that tomorrow) we still had some reservations. Of course, she exceeded them and is doing really well and still within the “average” range for a 2 year old born in February, her actual age!

Day 17…

In addition to having follow-ups with cardiology, all premature infants have their eyes examined several times during their NICU stay and then additional follow-ups after they are discharged because eye and lung development are some of the last things that occur while the babe is in the womb growing and growing.

The eye exams are rather invasive and test to see if the blood vessels have fully developed in the eyes.  When June was in the unit, they would always ask parents to leave when it was time for the eye exam.

Screenshot 2018-05-17 at 7.45.56 PM.png

Eye Exams make me very sweepy

June had two eye exams while in the unit and then we had two exams after discharge where we took her into the eye clinic.  Lew asked the first time if we needed to leave and the doc said if it was his kid he would leave but his wife would definitely stay.  So not really knowing how to take that we stayed.  I won’t go into the details, but I totally see why he left.  They had us bundle her up in a swaddle blanket and the aide held sat in the exam chair you normally would sit in and held june in her lab.  The doc then came around and performed the exam which was excruciating for June and she screamed the entire time. Thankfully Lew was with me that time. The blood vessels were not fully developed so we had to go back.  I was solo the second time and it was rough, but thankfully she got the all clear.

Screenshot 2018-05-17 at 7.55.34 PM

Hello Dilated eyes

This year we were grateful that her appointment went amazingly well and she doesn’t have to have another exam until before she goes to Kindergarten.  This is definitely not the norm as many Premature babies deal with eye issues.  Just another thing we are extra thankful for.

Day 16…

One of the things I wasn’t really prepared for was discharge. I had been discharged and had some follow-up appointments with my OB–2 weeks post-partum to follow up on my C-section scar and 6-weeks to check on how things were going overall. That was a hard one as often you’ve got your baby with you and June was still in the NICU at that point.

But June’s discharge from the NICU brought with it a SLEW of additional appointments and follow-ups with specialists.  Now, in reality, we are SUPER fortunate that we didn’t have as many of these as some do, but we did have some concerns.  Thankfully June had a very small brain bleed when she was born which is very common in premature babies.  She also had an edema on her right cheek from the oxygen that we had an ultrasound on (or tried, that is) but it has all but gone down two years later.

IMG_8535.JPG

You can see a little bit of the edema still on her right cheek.  Didn’t stop her from enjoying her first Reds game!

Our first big follow-up other than the Grad Clinic was her Cardiology appointment 6- months after she was discharged in October of 2016.  In her NICU stay she was given an echocardiogram and it was discovered she had a PFO–Patent Foramen ovale.

Patent foramen ovale (PFO) is a hole between the left and right atria (upper chambers) of the heart. This hole exists in everyone before birth, but most often closes shortly after being born. PFO is what the hole is called when it fails to close naturally after a baby is born.

IMG_8573

Baby Blood Pressure Cuff!

June’s follow-up with her cardiologist in October was a bit scary.  We weren’t sure if the PFO had closed on it’s own or if it was still present.  There was lots of waiting while she had another echocardiogram and then we waited on the Cardiologist to come in and examine her and read and interpret the results.

 

56DFE890-D6F0-44D7-8F56-1495758BEBAF

After lots of waiting and playing with the paper, June was given the all clear from Cardiology! One more hurdle we had jumped!

 

Day 15…

Once home, the journey continued. And still does. I want June to be strong and brave knowing she’s overcome a lot, but not define her. But I also want her to always remember all that she has already overcome when things are hard and she wants to give up.  Coming home from the NICU was amazing, but there will still hurdles.

Screenshot 2018-05-14 at 3.26.13 PM

We were grateful for amazing caretakers from our Pediatrician’s office, to specialists to our grad clinic and the gals at the local coffee shop who always took great care of us all as we transitioned home.

Coming home with June on Oxygen and an apnea monitor was both a great thing and  another thing to manage.  Making sure we always had enough oxygen in the tank, having our travel tank with us, keeping the apnea wires stuck on correctly, not putting the cannula in upside down resulting in June looking like Rudolph.

It was a lot to learn on top of continuing to pump, feed her high calorie formula (which was another expectation buster that I wouldn’t be nursing 100% of the time), buy said (expensive) formula, always making sure we had preemie diapers (of which we could only find in Lexington).  D e e p  B r e a t h s….

 

But eventually we reached the day at her first follow-up appointment at the Grad Clinic where her oxygen saturations were great so we got to take away oxygen.  We did keep the monitor as she was having silent reflux.  She would seem totally fine and then the monitor would blare and we would panic finding her red faced and we would have to essentially turn her over and beat the back of her until she stopped choking.  It was absolutely terrifying.

Screenshot 2018-05-15 at 8.33.52 PM

So we started medication and the monitor helped save our sanity and eventually, and at 5 months–3 months after coming home–we had a fully cordless baby!
Screenshot 2018-05-15 at 8.48.08 PM

Day 14…

 

After 6 weeks, I knew that I had already used half of my maternity leave sitting in the NICU.  I struggled immensely with the decision to go back to work until June Parker came home so that I could have at least 6 weeks at home with her.

I distinctly recall one Saturday sitting in the unit, talking to Alice and another nurse about how long they thought she’d be in the unit and if I should go back.  I explained my office was about a 10 minute walk from the hospital (but honestly, closer to 15 or ore by the time I waited on elevators, got checked in, got scrubbed in and got to June’s nursery). They said there were other UK mamas who had gone back to work with a baby in the unit and that it always seemed to give them purpose and a drive.

While I felt like I didn’t have any options, I reluctantly nodded my head.

Screenshot 2018-05-14 at 3.26.34 PM

Again, the unachievable expectations. I know that parental leave in this country isn’t at all what it could be, but after having to endure such a challenging start to parenthood, it would have been nice to have had more than 6 weeks home with our babe. I know often women have to make the same kind of decisions simply because they don’t have the time banked up. Especially when you’re talking about a second or third child. I was already worrying about time once I returned to work full time because I knew June would have a lot of follow up Dr’s appt’s and I would have absolutely no leave remaining.  I didn’t have 12 weeks to begin with but thankfully had short-term disability so that helped out financially once my sick and vacation time had expired.

The schedule was grueling.  I went in to the office at 7am, headed over to the unit around 8 to drop off the milk I had pumped the night before and do June’s 8 o’clock care–diaper change, temperature, feeding, etc. then I would make the 15 minute walk back.  I’d leave around 11:45 to make it for her 12pm care, only that often it had already been done.  The unit would shut down at 4pm for Sterile Procedures, so I would stay in the office a bit longer and be there when the unit reopened at 5pm and stay until shift change at 7pm.

Screenshot 2018-05-14 at 3.27.18 PM

Lew had gone back to work for several weeks at this point and was also helping on our house renovations.  He also had picked up a lot of overtime thinking that he wanted to get in some extra shifts before June was born.  So he was working 4-days a week and coming in at 5pm to see June before he would have to clock in over in the adult trauma unit. Initially we thought he’d be able to make see her on nights he worked, but with the level of severity and infection of many of his patients it wasn’t safe.

After one week of me returning to work, we got word that June would be moving down to the step-down unit.  This was great, in that it meant that she was one step closer to going home! But also meant since June only had a primary at night shift, we were going to be missing all the familiar faces we had come to love.

The step-down unit was great and Lew and I continued to keep the same, exhausted schedule–him working 4 days a week, me working and going back and forth multiple times a day to the NICU and trying to get our home ready for June to come home to.  We had some drywall work done so there was dust everywhere–not a place you want to bring a baby with underdeveloped lungs into.  We looked into getting someone to deep clean our home before she was discharged and it was going to be $800.  Yeah, right.  Not happening.  So, we buckled up and with the help of Lewie’s amazing parents, got it done –mostly with their help.

One weekend on a visit, we got word that June was likely going home in the next few days and we needed to bring her carseat in so they could do the carseat test.  We knew that June was going to be going home on Oxygen and with a heart monitor.  The carseat test would monitor how she did in those positions–would her oxygen saturations plummet or would she be okay? Thankfully she passed with flying colors.  I went to Buy Buy Baby hoping for some new Preemie clothes (which were super hard to find!) to bring her home in.  It wasn’t what I was hoping for, but it worked.

On Monday, April 11th, just a few days prior to her due date, we brought June home.  We alerted our supervisors over the weekend and then early that morning to the step down unit.  Our absolute favorite nurse in Mother/Baby, Joan, was working that day and since the step down unit is on that floor, she commandeered the stroller so that we had to come find her so she could see June before we left. We got June ready, went in to watch several videos about caring for her at home and then started the discharge process.

Screenshot 2018-05-14 at 3.22.26 PM

It was very surreal–especially being in the step down unit.  Again, no familiar nurses and even the APP on duty that day was new to us.  We were educated multiple times on her oxygen and monitor and how to stop the machine if her heart rate were to drop.  We learned very quickly that it’s much more difficult to keep the wires and sticky pads on when you’re outside of the hospital environment.

IMG_6904

Once discharged, we made our way to see Joan and get the stroller and then up to the 4th floor to say goodbye to some of our nurse family there.   We then headed to the car with our precious cargo.  Lew had promised me a steak dinner from Blue Heron once June was released (no rare meat during pregnancy) but darn them–they are closed on Mondays.  I don’t recall much about leaving Lexington other than sitting in the back with June and looking up front to see that Lew was incredibly nervous. Her monitor went off several times although she was okay–it was a terrifying sound.

We came inside and breathed a sign of relief.  We finally had our girl home.

2016-04-11 15.43.07

Day 13…

In our 56 days in the NICU, there were definitely challenges, but also milestones that were pretty incredible.  The staff again, was remarkable and we made such amazing connections with them.  They made a sign recognizing each little moment and didn’t let us forget it–first time Mom held me, first time Dad held me, first bottle, holidays–they were all recognized.

IMG_3496

We got to celebrate June wearing clothes for the first time.  Figuring out how to not just have her in a snap sleeper so that her monitor cords could fit through but actually putting her in a onesie and pants.  Putting a bow in her hair.

5938BC96-DA06-4C0E-875C-D86EF254ECDD

We had several holidays that we celebrated–Valentine’s Day, St. Patrick’s Day, March Madness and Easter.  Each one was celebrated with specific sheets and another sign to add to the book that we ended up taking home with us.

The biggest milestone was getting to breastfeed June on day 47 of her life.  We worked with lactation toward this goal and continuing to pump and do lots of skin-to-skin kangaroo care was huge in making this milestone a reality.

IMG_6763

Even going back to work after 6 weeks–we celebrated that I was healthy and June was healthy enough to just be feeding and growing.  I was close enough that I came over 3 times a day for cares and to drop off milk or nurse her.

781E9135-7FCF-47BD-A3B6-64534E5A453F

There were certainly lots of hurdles, but there were also many, many, great memories that made our journey into parenthood very sweet.

Day 12…

It’s hard to believe that we are in the homestretch of March for Dimes and sharing our story!

Our 58-day NICU experience was full of ups and downs.  There were both milestones and challenge.  UK is a level IV NICU so that means that there were lots of very sick babies there–many who had been flown in from smaller regional hospitals here in KY, WV and even TN.  Due to that, when we met with our social worker that first night over in the Mother/Baby unit, we inquired about staying in the Ronald McDonald house, however it was at capacity.  Since we only lived 30 minutes away, we decided that we would stay on the list, but would always defer to someone else who had a further commute than we did.

This meant that once my blood pressure stabilized, I was discharged to go home.  Home to a house that was mid-renovation as we still had 2 months until baby (so we thought).  A house that didn’t have a finished nursery and a house that was quiet.  I was grateful that my first night home, our sweet pup Gracie was here.  She had been with my in-laws that entire week and I had missed her snuggles.  It wasn’t a baby’s cry, but I was glad to have her there.

Screenshot 2018-05-13 at 8.35.22 PM

I’ll never forget going to bed that first night–finally out of the hospital bed and in my own cozy space–and saying good night to Lew, then to Gracie and through tears, to Junie Bugs….

I was still up every three hours pumping and in those early morning hours would call and check in on June Parker.  Thankfully, she had a primary night nurse, Molly, who would graciously answer and tell me how great June was doing, any updates on her weight, if she’d had a bath (we tried to be there to give her all her baths but sometimes it wasn’t possible).  I wasn’t there a ton at night so I honestly didn’t get to know Molly that great during our NICU experience but she and her husband are apart of our extended family now. She is just one of the amazing folks we’ve come to love.

During the days, I would get up, pump, shower, we would drive to Lexington (or I would after I was released to drive after my C-section and Lew had gone back to work) and try and make it there in time for morning rounds.  June was on the APP team (Advanced Practice Practitioner–made up of Nurse Practitioners and Physician Assistants) and we were so incredibly grateful to have a good friend on this team. Rhonda was a godsend to text questions to if I didn’t understand something, to get updates if I was scared or just have someone that we knew that understood what was going on.

Screenshot 2018-05-13 at 8.37.47 PM

One of the challenges and points of grief that I’m just now realizing is how deep your expectations go when it comes to having a child.  While I’m so incredibly grateful for our supper club who came to visit me in the hospital, June could only have limited visitors since it was flu season–and only two at a time. The thought of having a pastor from church or coworkers come visit our daughter didn’t happen (although I had several friends and coworkers who came to visit while I was still in mother/baby).

There were days that I would walk in and see June with a unicorn–an IV of blood in a vein in the front of her head.  I specifically remember almost losing it that day and Rhonda being there to help calm my nerves and explain why they were doing what they were doing.

IMG_1406

At only four-five days old, they decided to take June off the bubble and try her on room air and bottle feed.  It was good for a day and then back on the bubble and tube feeds she went.  So much back and forth.

Screenshot 2018-05-13 at 8.33.22 PM

While there were plenty of challenges, there were also plenty of milestones and celebrations.

Day 11…

At some point late in the evening, I was taken off the Mag drip and moved over to the Mother & Baby unit across the hall essentially.  This was bittersweet as ideally we would have been moving there with a baby staying in our room, however, this meant that we were free to go up to the unit at our own leisure!  We did have to be mindful to not go during shift change or when the staff was doing sterile procedures.

Since I was up every 3 hours pumping or having staff coming in to check on me, we were able to go up several times to visit June.  It was soooo nice to have a little more freedom.

2016-02-14 11.53.49 (1).jpg

June was on a bubble which is a little more intense than just being on straight Oxygen so she had that tube around her face and in her nose.  She also had a feeding tube in which was how she was getting the colostrum I was pumping which was the TINIEST amount.  In the beginning, I would take up the milk in these tiny syringes. She also had a pulse ox on her foot and then the heart monitors and a tiny IV where she was getting nutrition (TPN)

The best part of moving into day 2 of June’s life was being able to hold her.  It was truly one of the best days of my life. Hands down. (Pardon the odd camera angles)

Day 10…

After leaving the NICU and heading back downstairs to the labor hall, I had a mix of elated and incredibly sad feelings.  I just got to see my daughter!!! But I still wasn’t able to hold her.  She had so much Red hair! But I was having to go down a floor and down an incredibly long hallway back to the room where I had hoped to deliver a baby and wait patiently for my blood pressure to go down so they could take me off the magnesium drip.

Oh and it was time to pump again.

But then, the best thing possible happened.

This needs a little backstory.

In September of 2015, I flew to Orlando with a friend to attend a Leadership conference.  We were gifted a few books upon return, one of which was Jen Hatmaker’s For The Love.  It had come out the week of the conference and as my friend Shannon and I took advantage of the lazy river, we saw attendee after attendee with the book.

Now, honestly, I’m kinda slow to jump on any “bandwagon” of an author or a book or a movement.  I chalk it up to my Enneagram 4-ness.  I knew Jen’s book had come out.  And I was excited that I was going to get it for free in a few months.  But I was probably the last of my friends to read it.  I heard Jen on lots of podcasts as she was promoting the book and heard a lot about her Supper Club group and thought it was cool.

So I ended up reading this around the time my Mom was sick and passed away.  And the idea of a Supper Club had MUCH greater meaning at that point. With loss and a new baby on the way, I knew that my community tank was low and I needed to intentionally work to make sure it didn’t stay that way.

I reached out to a handful of couple-friends and asked if we could start a supper club in the new year.  Many of them had read the book or I sent them an excerpt.  We came up with ground rules–host does everything, no kids (once our little nugget was old enough to just not sleep the entire time), and we’d do dinner out after we’d been through a rotation of homes.

January came and we had an amazing time.  Our group bonded incredibly well even though not everyone knew one another.  And then February came.  We were set to host.

On Saturday, February 13th.

Jen talks in her book about how their supper club had boxed up dinner and taken it to the hospital when one of their families had a parent in the hospital.  Our group did the exact same thing (except for bring the food–I was still NPO so no food for me).

This was the absolute BEST thing to come back to after having left June upstairs in the NICU.  I was sad and I saw Lew sending lots of texts and realized that they were coming to us.  We asked the nurses if having 6 visitors was okay (the limit is typically 2) and under the circumstances they went out of their way to accommodate us.  We got to share pics of our daughter and the jokesters in the group made sure I laughed (but not hard enough to bust my stitches).

We didn’t grab a pic that night–and we didn’t for another 5 months until we went to Lexington Restaurant Week 2016, which has become one of our favorite things to do as a group–I can’t wait for our 2018 pic in a few months!

That group saved me that night.  I could have been incredibly sad under the circumstances but they saved me–community has saved me these past few years.  It has looked different as our church community has changed, we’ve had job transitions in our home and then the reality of being a two-parent-work-outside-the-home household has been tough on community.  But it is worth it.  Absolutely worth it.

Whatever life is handing you–don’t go it alone. Reach out.  I promise, it’ll be worth it.

IMG_0856

Supper Club at Lexington Restaurant Week 2017