Frick Twins: Home Sweet Home

74 days later.  And Henry and Jameson are home. 

Henry actually got his clearance a week ago while Jameson just got his walking papers today.  Surprisingly, having Henry home this week seemed relatively easy, at least compared to our expectations based on our room-in at the hospital.  The biggest challenge was the energy it took to still drive the 45 minutes over to the hospital to visit Jameson.  Henry was getting solid blocks of 3-4 hours of sleep at night and was eating well and without incident.  We’ll see whether it’s twice or exponentially as hard with Jameson at home tonight 

It’s been an amazing journey and it was with a broad swath of feelings that we walked out of the NICU today.  Definitely some misty eyes.  We said goodbye to a couple of our favorite nurses, Christine and Kathleen, took a few photos, and walked out the door for hopefully the last time.  Raechel and I have had a lot of time to process our thoughts and feelings as we’ve gone through the whole experience.  The highs and lows have been as high and as low as any we’ve experienced.  The false starts were mentally traumatic.  The times when they would achieve a first, be it removal of their incubator or NG tube, or when we first got to hold them, were moments we will remember forever.  Ultimately, I think the main point is that it was always in the hands of Henry and Jameson.  You could say it was a lesson in parenting that while we want to protect and do everything for them, we have limited control.  I’m sure we’ll get a few more lessons on that over the years.

And the other thing that will stick with us is everyone’s support, through email, phone, text, and in-person.  It has been invaluable to getting us to this point.  So with all sincerity, we say thank you.

We’ve utilized this blog over time to update on major life events.  While I’m certain we’ll post periodically through time, our frequency will certainly decline as we turn all of our energy and time to raising Henry and Jameson.  In our home :)

Henry heading home on December 6th

NICU Graduation!

Dave with his boys, about to leave the NICU

Frick Family! Outside the doors of the NICU

Thanksgiving Week Update

Dave and I spent the night in the NICU Monday night for our official "rooming in" with the boys.  This allowed us to practice being on our own with the boys all night, while they are still hooked up to monitors and the nurses are just outside the door in case of an emergency. 

The family room in the NICU

Daddy and Henry

Henry had a great night - a big feeding followed by a few good breast feeding sessions. He also had a few periods of quietness that allowed us to put him down and get some rest. 

Jameson had two bradycardias during feedings, the second was the most significant brady either of us have witnessed and required nurses assistant to get him breathing again. Probably the scariest moment of my life. He was immediately sent back to his standard NICU bed and was given a nasal cannula to get his oxygen levels back up. By morning, they rearranged the nursing staff so the boys could get dedicated support.


Tuesday morning we met with the neonatologist and she recommended Jameson will likely need another 10+ days to give his system more time to mature and hopefully no more bradies. Given we thought Jameson was developmentally head of Henry, the neonatologist suggested to also hold on to Henry for an extra couple of days for observation. Unfortunately Henry also had a series of bradies on Thursday evening, so he is now under close watch with no ETA of coming home. 

Dave and I are trying to keep positive spirits. We are thankful both boys were still in care of the amazing NICU stuff during these episodes. And we are especially thankful to be surrounded by so much love and support from our friends and family.


The boys 40 week due date was Dec 4th - and that is when the NICU staff initially suggested we should anticipate them coming home.  So hopefully we will be able to bring them home within the next week or so.

Henry: 8 Weeks 

Jameson: 8 Weeks 

With Jameson: Mommy's little turkey

Frick Family

Ask and you shall receive

Well, last update we were talking about playing the waiting game to see when the boys were going to get to come home.  Over the course of the last week or so, Jameson and Henry have picked up their feeding.  Dr. Wertz, the neonatologist on this past week, adjusted their feeding intervals from 3 hours to 4 hours to get their hunger urges going.  It did the trick as the boys were much more voracious in their eating.  This morning, the feedings tubes were removed from both of the boys and they taking all feedings by mouth. (Pictures below) So, fingers crossed, the boys are on their countdown to departure.  We do our overnight stay in the NICU “suite” tomorrow night where we get to experience our first of many nights of limited/no sleep.  Then, if all goes well, the boys should be coming home on Wednesday, just in time for their first thanksgiving. 

Jameson

Henry

Overnight suite in the NICU

We don't know when...

One of the more common questions that we get from folks is when are the boys coming home.  First, we just want to say thank you, it means a lot to us that people reach out and care about how our boys are doing.  We usually share the fact that their original birth date, Dec 4, is the best estimate.  All things considered, they are tracking a bit behind their gestational age, though nothing that has alarmed the doctors.  But to be honest, we don’t know, and it could easily be Day X for one boy and Day Y for the other.  It’s a tough reality to deal with, especially for relatively Type A personalities like ourselves who are used to schedules and metrics and results orientation (Intel shoutout).  We watch the boys each day, and some days are good and other days are setbacks.  And sometimes it’s good for Jameson and not for Henry, or vice versa.  And we’ve read so/too much that we have expectations for what they should do at week 37 when maybe their internal clock says I’m not ready to do that until week 38.  It’s an easy situation to get stressed or cynical, because even the doctors and staff can’t answer the biggest question on our mind each day: when can we bring them home?
You feel out of control and that your kids are in complete control of their development.  I’ve heard from fellow parents that is sometimes a feeling you have to get used over the years :)  Just happening a little bit earlier or in a more exaggerated manner for us.  Fingers crossed, it’s sooner rather than later.

We also wanted to say thank you to our friend, Kathleen, who has been extremely generous with her time in driving Raechel to the hospital those mornings when I have to work.  Countless thank you’s.  It eases Raechel’s burden/energy of driving the ~2 hours a day roundtrip and lets us spend our return drive home together, which is great for our relationship and just shared decompress time post-NICU. 

Some quick stats for those who are interested: the boys are 6 ¾ and 6 ¼ lbs.  Jameson is doing better on his bottle/breast feedings, probably 2/3 of the way there as he’s been pretty good at doing a bottle feeding every other time and getting most/all of it down.  Henry is having a harder time with mastering the suck/swallow/breathe coordination (accompanied by the occasional grunt/poop) and has had a couple Bradys over the past two days during his bottle-feedings.  It’s a tough thing to master given the variables, one of which is us :)  The speech pathologist has printed out recommended instructions on body positions and procedures, but we’re still trying to find that groove where it all goes smoothly.  But so far as we know, that’s the last main hurdle.  Might take days, or weeks, or maybe a month if that’s what they decide.  But regardless of when, there probably won’t be two happier parents on the planet when we’re able to bring them into our home the first time.  Can’t wait to share that update

Jameson (left) and Henry (right)

Dad with Henry (left) and Jameson (right)

Henry, looking suspicious of David's storytelling

Mom and her growing boys

Frick Twins: 6 Weeks!

The boys reached their 6 week birthday today!  It’s been some time since we posted a blog, so just a bit of a health download on the boys.  There was a some back and forth on their dosage of caffeine (off for a while, back on when they had a couple Brady’s, and back off again now).  Henry had a Brady yesterday, but they have largely cleared up for both boys at this point.  Henry has cleared 6lbs and Jameson is at 5 ¾ lbs.  They no longer have the oxygen monitor on their feet, but still have the heart and respiratory monitors on their chest.  And while they are starting to intermittently breast and bottle feed, they still require the NG tubes to their stomachs.  They seem to have the sucking instinct down, but haven’t quite mastered the suck/swallow/breathe coordination just yet.  Their feeding seems to be the long pole in the tent for their coming home, so hopefully that clicks in the next week or two.  Everything about their development seems to be on track according to the doctors and nurses.

Probably the thing that sticks out to us the most now is that instead of preemies, they look like newborn babies.  Their cheeks have filled in, their skin tone is more normalized, and their breathing patterns are more regular than when they first arrived in early October.  They moved up from preemie sized clothes to newborn, though it rests a little big on their frames.  It’s actually a little challenging to fit them in my shirt for skin-to-skin contact as their legs rest on my legs now versus just sitting on my stomach.  I’ve even noticed that their grunting, while still frequent, seems to be more fruitful in its efforts (i.e. more gas and poop and less just frustrating clenching).  That’s a sign that their digestive tract is starting to catch up to a full-term newborns as well.  And their cries seem to be getting louder.  A lot louder.  Which every parent in the world means they have good lungs and that’s a good thing, right?  Well, we are particularly thankful and they are welcome to cry as loud as they want.  At least until we get them home in a couple of weeks and it’s the middle of the night.

So fingers crossed things continue to go well.  There is no set timetable, but we’re still hoping for a Thanksgiving at home with the boys.  To be honest, it seems like it may just depend on the neonatologist on duty that given week.  Referencing back to the caffeine mention in the first bit, one neonatologist thought when they returned on caffeine they may be on it for 1-2 weeks.  4 days later the next neonatologist had taken them off of it.  So who knows.  We’ll just take it as it comes and keep hoping and praying they’ll be home soon.

Henry with his Bunny

Jameson with his Giraffe

Dad and the boys: Henry (left) and Jameson (right)

Mom and Henry

Friends of NICU

Hope everyone is well.  Raechel and I had a chance to go to a fundraiser for the Friends of NICU over the weekend.  It was a nice chance for us to get out while the boys are in the good hands of the nursing staff, and also obviously a worthy cause.  The charity was started 6 years ago by a couple who, like us, had twins at just over 30 weeks.  They support in-need families who have babies in the NICU, primarily by providing nearby housing and/or gas cards for transport to local hospitals for families who don’t live close by.  They actually have provided a couple of RVs that sit outside the Family Birthing Center so that families can visit their kids whenever they like, 24/7.  Health-wise, it allows the parents to provide the skin-to-skin contact that helps improve the babies’ health.  Very tangible in terms of how the funds are spent and the benefit provided.  They had a family speak from Chico (about two hours north) and how meaningful it was to them that, instead of initially visiting their baby 1-2 days a week, they were able to spend every day for their remaining 5 weeks with their child. 

 

Point being, the event got Raechel and I discussing how we could contribute further to the NICU cause.  Due to the generosity of everyone already, we have plenty of infant clothing, toys, supplies, etc., for the boys for this Christmas.  If you were planning on buying presents for them this Christmas, we’d love you dedicate those funds towards a donation to the charity.  To donate, the method of payment is as follows…

 

Mailing Address: Friends of NICU, PO Box 6242, Folsom, CA 95763

Paypal Address: purkis@friendsofnicu.com

 

 

For more info on Friends of NICU, visit: 

http://friendsofnicu.com/blog/our-mission/

Rae and David at the Celebration of Miracles Event

Visiting the Frick Twins

Raechel and I just wanted to send a quick note of heads-up that as of late we are limiting visitation for the boys in the NICU.  We wanted to share a little background as to why. 

Henry and Jameson are still at only 35 weeks of gestational development.  We have to remember that had they followed the normal pregnancy timeline, they would still be in the womb for more than another month, removed from light, touch, and surrounded by fluid to help mute all the noise.  Right now, the best thing for them is uninterrupted sleep and bonding time with Mom.  For premature babies like Henry and Jameson, sleep is essential for growth, brain development, learning, and memory.  Visitors bring distraction and can overly stimulate our growing boys.  Disturbances in sleep can cause exhaustion, damage to the developing body, dysfunction of the immune system resulting in susceptibility to infection, and serious stress and agitation.  Also, their immune system is immature, and the risk of a visitor bringing in a virus or other illness is extremely scary and not worth the risk to their health.  That’s particularly the case given we’re coming upon the peak of flu season.  Several of our Neonatologists have met with us to stress importance of sleep for the next few months and to keep visitor counts to the bare minimum.  Since we will be measuring their development based on their original Dec due date, we plan to wait until early February to extend invitations for visitors in our home or introduce them into environments with a broader set of people.  It doesn’t mean there won’t be exceptions to the rule, but we’ll choose those time and places depending on the circumstances and our doctor’s recommendations.  It’s not an easy decision, but one that is the best interests of Jameson and Henry’s short- and long-term health. 

 

We appreciate all the support and hope this background provides some perspective and understanding.  If this has sparked additional interest in learning about preemies, I have a lengthy text book anyone is welcome to borrow  ;)  We’re happy to keep everyone updated as frequently as we can, and address any questions you might have.

Henry and Jameson: One Month Old!

We are very pleased and proud parents to announce that our boys have reached their 1 month birthday!  It's difficult to have the proper perspective of the last month because we're still in the midst of our NICU experience, but a milestone like this provides a chance to reflect.  I think the overwhelming feelings are that of being grateful and humble.  It's a recurrent theme for how we feel about our nurses, our families and support system, and toward our boys.  To that end, today we had the opportunity to say thanks in prayer with Father Matthew of nearby St. Joseph Morello, who was kind enough to join us and bestow a blessing upon Henry and Jameson.  It was a special moment as we were joined by Raechel's mother and sister, as well as our favorite nurse Mary who also belongs to Fr. Matthew's parish.  And to that point on gratefulness, to everyone that has reached out to us, sent a gift or even just a quick email, we say thank you.

A quick funny anecdote about the experience...Fr. Matthew requested to the nurses some sterilized water that he could bless as holy water.  One of the nurses reached into a drawer and pulled out some Similac sterilized water which fit the bill.  We kept the rest as a just in case of emergency.  It is Halloween after all :)

One other quick story...one of my best friends, Steve Bueche, got married last weekend.  Months ago I had told Steve that I couldn't picture a scenario where I would be able to make it to the wedding given our projected birth date.  With the boys arriving early, I still didn't think it was an option.  But with the boys stable and in good hands, and along with the encouragement of my wife, I decided at the last minute to go.  It was hard, but I'm glad I did.  It was a special weekend to share with Steve and his wife Colin.  At a few different moments, people asked me if it was hard to be away.  It was; there were a lot of moments of worry and stress, and generally feeling like a terrible father for being away.  At the same time, I felt like Henry and Jameson were in good hands.  I think it's because trust is such a huge part of the NICU process that I could actually make the trip.  And if there is anyone I would make the trip for, it's Steve.  He's a great person and friend, and such a role model that he and Colin will be godparents to Jameson.

We are 1 Month Old!!! Henry (left) and Jameson (right)

Jameson (left) and Henry (right)

Frick Family with Father Matthew

Henry as Thing 1 and Jameson as Thing 2 for Hallween

Henry at 4 weeks with his bunny

Jameson at 4 weeks with his giraffe

Frick Twins: Bath Time

Mom and Dad got to experience bathing the boys this week. A little easier than we anticipated. The nurse showed us how to keep them loosely bundled so they feel their boundaries and safe; and kept a heater above to keep them warm.  Here are a few pictures and a video!

Rae bathing Henry

Dave drying Jameson

Dave washing Jameson's hair

 

Frick Twins: Feeding

One of the check marks the boys need to earn is feeding on their own - bottle or breast.  While the boys are practicing both, we are learning this is something the boys must be developmentally ready to coordinate sucking with breathing and swallowing. Every day is different for Jameson and Henry. Two nights ago, the boys took a bottle for the night nurse (20 ml for Henry, 15 ml for Jameson), then completed the rest of their feeding via NG tube. Yesterday however, both boys stopped breathing with the bottle, turned blue (which no mother wants to see that!) and took a little longer than normal to catch their breath again. As one nurse shared: In the NICU, it is a lot of 2 steps forward, 1 step back... 

 

Dad giving Henry a bottle for the first time

Burping Henry

Milk Face

Frick Twins: Week 3, Development Week 34

Something that Raechel and I have noticed of late is how quickly time is flying. I've heard parents say something along those lines about their own kids for years, and I can vouch for that fact based on first hand experience.

Since our last update, the boys have made good progress. They have maintained their temperature on their own since moving to isolettes. They've started doing a little bottle feeding, which is really fun to participate in and witness. And as of today, they've each gained 1lb since birth.

They aren't without their challenges as we found out today they'll be supplementing Henry with some vitamins due to his blood being anemic, or low on red blood cells. Nothing too concerning and very common at this point in his development, but they do outline what the scenarios would look like if things get worse, which could extend all the way to a transfusion. Very unlikely at this point that it would reach that point, but it's an example of one of those things floating out there that seems to make your shoulders a little more tense and sleep a little less sound. Looking forward to the day when the boys are home, healthy, growing, and that stress goes away. But again, I've heard from experienced parents that feeling never disappears :)

Henry

 

Jameson

Frick Twins: Isolette Graduation

Last night the boys graduated from Isolette incubators to open cribs. They are now able to regulate their own body temperature and sleep in just PJs and a swaddle blanket. They are both adjusting to all the new sounds of the NICU that were muffled before in the isolettes. 

Jameson had a rough day breathing on Friday and was given a nasal cannula again to provide assistance. We also cut back on visitors to keep the noise down and any outside germs away. Since then, he is much more comfortable. 

The boys wore their new Notre Dame caps last Saturday and proved to be good luck for the fighting Irish! ND beat USC 14-10. Thank you Frick Family for the little caps.  

Frick Twins: 2 Weeks Old

Hard to believe that the boys are two weeks old today! (or 32.6 in development terms)  They’ve been doing well since our last update.  Henry is off of his nasal cannula as of 3 days ago.  Both boys are making steady progress on decreasing their apneas and bradys, which is great.  The doctor said yesterday a 3-5 week estimate seems reasonable on bringing them home, but that all depends on how the boys do over that time period.  As a parent, it’s a tough one because we want to bring them home as soon as possible, but not a minute before they’re ready.  Of course, we would love it if we can bring them home to share our first family Thanksgiving at home, but we’re not getting greedy on our asks.

 

Our schedule has shifted a little bit this week as I’m back at work.  Raechel goes over in the mornings and usually does a 6-7 hour shift.  I either join her in the morning and do some work from the hospital café, or go over in the afternoon, depending on work requirements, etc.  Big thanks to Lauryn, the Beilers, and my Dad for helping with transportation as Raechel and I head over at different times during the day.  Intel has been incredibly supportive of both Raechel and I.  My boss, Mike, gets a special shout out for being flexible on how I manage my schedule.  He’s a great example of the family-first attitude, one that I have new level of appreciation for right now.  And Raechel is going to be able to take off a substantial amount of time from work between pregnancy leave, FMLA, and sabbatical.  We feel incredibly thankful and fortunate to work for a company that can help ease some of the stress that comes from our situation.

 

We are also very appreciative of the prayers, flowers, balloons, lasagna and calzones (thanks Ellen and the Bowmans!), the preemie clothes, and everything else sent our direction.  It’s incredibly humbling to be on the receiving end of so much generosity and kindness.  Thank you!

With Henry

Henry now 3lb 14oz (3lb 7oz at birth)

Henry with his Bunny

Jameson now 3lb 6oz (2lb 15oz at birth)

Jameson with his Giraffe