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

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.

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

Frick Twins: Day 7

Sorry for the lack of updates over the last few days; combination of not having my laptop with me and being busy with babies, keeping up with everyday life stuff, etc…

 

Boys are doing well!  Every day brings a little more progress.  The boys are both off of their CPAP breathing machines, off their light to alleviate bilirubin, and off of their IVs.  The only invasive thing right now is their feeding tube that deposits the food through their nose down to their stomach until their sucking/digestive system develops.  That will likely stay in for ~a month more.  The boys and Raechel keep ramping up on their milk requirements/production, and should be in alignment in the next few days if things continue to trend well.  They still have their episodes where their heart or respiratory rates go outside of range, but either through their own or a little external stimulation brings them back into range within 10-15 seconds.  They monitor and record each of those “Bradys” (bradycardia) or “Apneas” and communicate shift-to-shift to keep track of their status.  One of the check marks that they can go home is that they have seven consecutive days without either of those, versus these days they’ll have one or more in an hour.

 

If you’re on Facebook, you’re probably aware that we’ve been able to have some skin-to-skin contact over the last few days, which is really exciting.  Today we were able to hold each of them for about 45 minutes, which was really mutually rewarding.  Raechel had the chance to read into a tape recorder yesterday that they can put into their incubator so the babies can hear her voice, and I’m working on picking the perfect read so I can add my own voice to the recording. 

 

David and Jameson

 

Rae and Henry

First Family Picture!

Henry and Jameson (showing off his guns)

Frick Twins: Day 4

Sorry for the delayed update today, been working the phones tracking down a breast pump this morning.  Managed to find one to rent locally, which after talking to a few different providers who said best case scenario was ~2 weeks made me so happy I about cried.  Amazing how tied in I’ve gotten to pumping J  Speaking of which, Raechel’s milk is starting to come in.  She went from 2ml/pump yesterday to more than 7ml in her most recent.  The boys are consuming 7ml and 17ml (Jameson a little less until his stomach gets used to food, he’s supplemented with a glucose+protein+minerals drip).  So she’s ramping up well to be able to provide those antibodies, etc that you can’t get from just formula.

 

Boys are doing pretty well today, a little more stable in their breathing and vital signs, but still periodically erratic as is normal with preemies at their age.  They have monitors on their heart rate, oxygen, and respiratory rate.  When they get outside range on either side, the machine starts beeping.  Makes for a very anxious parent to hear that sound, but again, very normal for their stage of development.  Hoping for some skin-to-skin “kangaroo” contact for the first time later today where they lay the baby on Raechel’s chest. 

 

David Jr., Lauren, and Kathy brought by some keepsakes to watch over the babies, which we really appreciate.  St. James and St. Henry now have their eyes on the babies, and a beautiful cross hangs over each of them.  They are going to have the most decorated nurseries in the NICU.

 

We can kind of laugh about it now, but here’s the contraction history Raechel was keeping track of on her iPhone app when we drove to the hospital.  Remember that Henry arrived at 3:11 and first contraction was at 1pm.  Typically when you’re sub-5 minute contractions you go to the hospital, and when they’re every 2 minutes it means you’re entering final phase of birthing.  I remember as we were driving I asked how far apart they were and she said, “30 seconds.”  I about crapped myself and said, “What?!!!”  Granted, she was measuring the end of one to the start of another vs start to start as you’re supposed to measure, but you can imagine the anxiety and adrenaline as we’re driving in the car.

Contraction App

Frick Twins: Day 3

We’ve been told that there will be ups and downs as Henry and Jameson grow and mature.  Today was a little more of a challenge, but given that’s average for this point post-delivery, we’re largely on plan.  They described it that usually there is a honeymoon period right after birth where the babies respond to the challenge, but over time exhaustion can make things a little bit tougher for their little bodies to compensate.  Last night they put Jameson back on the CPAP machine to help normalize his breathing.  It feeds through his nose, and he was still trying to breathe through his mouth, which negated the effect of the machine for a period of time.  But by this morning, the machine was doing its thing and his breathing was much more stabilized (in the 40-80 breaths per min vs last night it was spiking over 100).  Jameson also has some jaundice, very common for preemies and especially the smaller of twins.  The smaller twin usually compensates in utero by creating more red blood cells to absorb oxygen.  Now that he’s born, he needs to dispose of those.  They provide phototherapy light that he’ll be under for 2-3 days as that helps breakdown the red blood cells and makes it easier to excrete the broken down cells.  It basically looks like he’s in a mini-tanning bed.  They are monitoring it, but not out of the ordinary and not at a dangerous level.  Henry’s doing better, but also has some occasional moments where his breathing will pause.  It’s usually short and he solves it on his own, but a little stimulation helps also.  Raechel and I both got a chance to touch them through the hand holes of the incubator machine that they use to keep their temperature stable.  Raechel keeps getting more mobile, keeps on her 2-3 hour pumping schedule, and we’ve even managed to both take a shower today.  All in all, not a bad day

 

One comment on my medical notes: they’re an interpretation of a tired, non-medical brain of what I think I hear.  But I think I usually have the jist right.

 

Hard to believe Raechel’s first contraction was only 48 hours ago!  One of the other nurses made that comment, to which I replied, “For these guys, that was a lifetime ago”

Baby Henry

Frick Twins: Day 2

Today was a good day, the babies look a little stronger every time we see them.  Raechel was able to make a couple trips into the NICU today to meet and touch her brand new babies.  Everyone is progressing according to plan and both Henry and Jameson have managed to stay off any assisted breathing, though their respiratory rate can fluctuate.  They had their first tummy time, which the nurse said can help with breathing and digestion.  Jameson was a little fussy at first, but they let me touch him for the first time and that helped calm him down.  In general they’re pretty active moving their arms and legs around; they’ve already gotten a reputation with the nurses for being very feisty.  They’ve started introducing a little bit of milk+formula to their systems to get their digestive tracts moving.  The staff continues to monitor them very closely and keep us updated.  Raechel continues to heal and get stronger as well, doing some walks down the hallway and ramping up to solid foods. 

 

Kathy brought in some good old ND inspiration for the babies today you can see in the attached photo.  Thank you, it’s perfect!!!  Can’t have enough positive prayers and thoughts.  And thanks for all the flowers, balloons, etc. that everyone has sent!  Makes the hospital room much more cheery.

Cruisin to the NICU

Baby Henry, 2 days old

Baby Jameson, 2 days old

Rae touching Jameson

Notre Dame decor for the incubators

Frick Twins: Day 1

Baby Henry and Jameson arrived in dramatic fashion, i.e. Raechel had her first contraction at 1pm and babies were born a little after 3pm.  By the time we got to the birthing center, Raechel was already 7 cm.  I think I managed to get three update texts out and they were wheeling her into the OR prep.  I walked into the OR and Henry’s head literally started pushing through about a minute later.  Because they’re premmie’s at 31 weeks, they did an emergency C-Section to get Jameson out quickly 9 min after Henry was born (that description is way easier for me to write than verbalize as I had to be escorted out of the OR to watch through a small window).  They came in at a teeny 3lb 7oz and 2lb 15oz, though rounding up to 3lbs for Jameson makes it sound better / us feel better.  They had them on a CPAP w/normal air to help them breath and their lungs develop for about 24 hours and are currently testing them without it to see how they breathe on their own.  They said their X-Rays were great given how young they are; lungs looked good w/o fluid.  Assuming that goes well over the next few hours, the next key phase is getting them eating beyond their glucose+protein IV feed they have right now.  Raechel’s already been doing a great job pumping getting them started on colostrum / breast milk which I hand deliver down to the NICU every few hours and they provide to the babies. 

 

In terms of expectations for how long they are in the NICU, they want us to prepare for them being in until their actual due date in early December, but hopefully we’ll get to take them home sooner than that.  The NICU staff has been amazing; very helpful, attentive, and with the perfect attitude.  We’re taking it one day at a time; baby stepsJ 

 

I attached a couple of photos of the boys when they were about 15 minutes old and first wheeled into the NICU. 

 

Raechel’s recovery has been going great; she was up on her feet for the first time in less than 24 hours post-birth, granted for a short trip across the room to the bathroom.  We’ll hopefully get to take her down to meet Henry and Jameson for the first time later this afternoon.

15 Minutes Old: Baby A (Henry) and Baby B (Jameson)