Brida's Eulogy

Below is Brida's eulogy I gave during yesterday's service:

Thank you all for being here to support us and to celebrate Brida’s life.  The outpouring of love has been overwhelming and Erin and I can’t thank you enough.  I want to take a few minutes to share thoughts about Brida and how much she means to us.  Brida had a short time in this life, but we learned so much about God’s love through both Brida’s fighting spirit and the gifts we received on this journey.  In reflecting on Brida’s life, three lessons become apparent to me.  I believe these lessons are Brida’s legacy for our family.

The first lesson is that life is precious and worth fighting for. Brida fought for her life.  It is something difficult to explain unless you experience it first-hand.  When you held her you could feel her struggle, but stronger than that, you could sense her determination to overcome this condition with which she was burdened.  Before Brida was born, the doctors at the hospital cautioned us that it usually takes a long time for Hypoplastic Left Heart babies to recover from their first surgery because of how invasive it is.  They said we should expect her to be in the hospital for at least a month but to prepare for a longer stay, maybe 2, 3, 4 months.    When she was in the ICU, the nurses were amazed at how well she was doing and how quickly she progressed from surgery to having her breathing tube removed, to being released out of the unit. To everybody’s surprise, two weeks after surgery, Brida was released from the hospital.  Even more impressive than that was when she came home she survived her 2-year-old sister, who didn’t quite understand that Brida couldn’t be handled as her baby doll, including not being able to rub diaper cream on her head when her mom wasn’t looking.

A second lesson that Brida taught us is that we can do great things with God and each other.  When we first received the diagnosis about 5 months ago, Erin and I were devastated.  There were sleepless nights wondering what her life would be like and what it meant for our family.  We both questioned if we could handle the responsibility of caring for a child with her condition and her three sisters at the same time.  But, as we quickly discovered, God gives you the most strength in your most difficult moments.  As long as we have God at our side, we really can achieve a lot more than we think we can.   If Brida, a fragile infant, could accomplish what she did, why can’t we take the gifts we have and do equally great things?  

Brida’s third lesson for us is that Man’s capacity to love and care for those in need is without bounds.  Throughout my life, I prided myself on my self-sufficiency and not needing to ask others for help.  Without being asked, our family, friends, and this community prayed for us and served us and, honestly, I don’t know how we would have made it through these last couple of months without you.  Every prayer was felt and gave Erin and I the strength to do the best we could for Brida and accept that however it all turned out that God’s will would be done.

Erin and I want thank everyone that helped us on this journey.  First, our family.  My In-Laws: Pat and Colin. They didn’t hesitate to put their life on hold for a couple of months to live with us to care for our other three girls while we cared for Brida.  We want to thank my family members who continually offered us any help that we needed and came out here to support us during this difficult time: my sisters Joanne and Melody, my Brother-in-law Paul, my nephew Paul, my niece Auberey, my brother Scott and sister-in-law Diana and the rest of our families that have supported us.

We want to thank this entire Church community.  Especially Johanna and Mike O’Conner who did so much for us from organizing meals and mowing our lawn, to a baby shower, to everything else.  We want to thank the playgroup mothers, the Knights, the women’s group, our friends and neighbors, people in the LDS community; people who don’t even know us, but heard of our situation and offered us whatever we need; my co-workers, who were always supportive when they heard of what we were going through.  We are indebted to all of you, debts we can never repay.

I would like to close with a message for Brida.  Brida, we are forever indebted to you and what you gave to us.  We will miss you, but we know you are in a better place, a place far better than we as parents or as a family could ever provide for you.  If your short 6 weeks in this life is any guide, what you will teach us about heaven in the years to come will truly amaze. We love you, we’re proud of you, and we’re honored to be your parents.  We can’t wait to see you again. 

Brida's Memorial Slide Show

Below is the slide show video presented during calling hours before Brida's memorial service yesterday.

In Lieu of Flowers...

We didn't get this in the obituary, but in lieu of flowers, donations in Brida's name can be made to either National Right to Life or Primary Children's Medical Center.

Obituary and Service Arrangements

Below is Brida's obituary that should be printed in Sunday's Salt Lake Tribune.  It includes information on service hours.

Brida Elizabeth Akins, born on June 25, 2012, daughter of Erin and Samuel J. Akins, passed away peacefully in her sleep and was reunited with her heavenly Father on August 9, 2012. She was an inspiration to all with her fighting spirit, having been born with a congenital heart defect and recovering from surgery at 3 days of age. She spent her six weeks of life being kissed and cuddled, read to, sung to and deeply loved by her parents, and three big sisters, Rosemary, Mairead & Maggie.

She was a tremendous blessing to her family, who are overjoyed to have had their short time with her. She will be remembered for her absolute beauty, innocent sweetness, and trademark snort. She will be forever loved and forever missed.

In addition to her parents and sisters, she is survived by her grandparents Patricia and Colin K. Kearns and Joan and Samuel O. Akins, her aunts and uncles Joanne and Paul Miller, Melody Englund, Patricia Akins, Diana and Scott Akins, Maura Kearns, Melissa and Colin J. Kearns, and Kelly Jean and Kelly M. Kearns, and six loving cousins. The family wants to express a special thank you to all the doctors, nurses and staff at Primary Children’s Hospital for all the excellent and tender care that Brida received.  We are eternally grateful.

Services under the direction of Larkin Mortuary will be held on Tuesday, August 14^th at 6 PM at St. John the Baptist Parish in Draper, UT.  Services will be preceded by calling hours at the Church at 5 PM.  

Our Angel

It is with heavy and grieving hearts that Erin and I announce the passing of our beautiful Brida Elizabeth to her heavenly Father.  She passed away yesterday morning peacefully in her sleep.  This is a very difficult time for us and we are requesting your prayers for Brida and her family.  

Thank you all for your prayers, gifts, and service to us these past couple of months.  We will be posting the schedule for services later today.

New Feeding Tube and Other Updates

It has been a while since we last posted.  Here is a summary of the last couple of weeks:

• Last Wednesday, Brida or Maggie pulled out her feeding tube during the day (we think Maggie pulled her tape, which pulled out the tube).  Our neighbor graciously offered to watch Maggie while Erin brought Brida to the ER (for the third time).  They put an 8 Fr. tube in again (back to the larger size).  They had a much easier time putting this one in compared to the previous time and, consequently, got a lower radiation dose.
• Brida had another cardiologist appointment last week.  Her chest x-ray looked good, so they took her off of the Lasix (diaretic).  She is now only on aspirin, Zantac, and amoxicillin.  They also increased her feeding rate to 23 ml/hr.  
• Brida had another swallow study after the cardiologist appointment.  There was good news and back news from this test.  She aspirated much sooner than in the previous study (which isn't so good), but it wasn't a silent aspiration (she coughed) which is an indication that she is building strength.  She will need to stay on the NJ tube until the next study at the end of the month. 
• Brida's two big sisters visited their grandparents in CT for the last couple of weeks.  They are  flying back home tomorrow.
• Brida continues to gain weight.  She is now up to 4.415 kg.
• Brida was visited by her speech therapist a couple of times.  The therapist says that Brida continues to show progress with her suction.  We are doing some oral stimulation exercises with her every day to prevent her from developing an aversion.  This mostly involves rubbing her lips with milk or flavored chap stick and encouraging use of the pacifier.

We are not sure if it is because of the new feeding tube, the increased fluid volume, or something else. but Brida has been gagging multiple times during the day and evening.  Sometimes she spits up bile, other times nothing. It can be a bit stressful since her face turns red and she shows a lot of distress during these episodes.  This happened sometimes when she was still in the hospital, but until this past weekend, she really hasn't had any issues since she has been home.  We have an appointment with the pediatrician on Wednesday and we will be discussing this. 

We will try to post some pictures later this week.

Not again Brida!

Brida has made it very clear that she doesn't like her feeding tube.  Last night as we were getting her ready for bed she pulled out her NJ tube for the second time.  Erin and I called the on-call high-risk nurse to see if she can call in the orders to the ER for a new tube placement.  She wasn't able to get the orders in after hours, but she directed us to the more local branch of the hospital in Riverton and said the ER department can write the orders and have it placed.  This was to save us time from having to drive the extra 20 minutes to Primary Children's in SLC.

We drove over to the Riverton Hospital and they registered us and checked us in.  After waiting 10 minutes, a nurse called us in and checked her vital signs, took her weight, and checked her out.  We were then escorted to another room where we waited another 5-10 minutes until a doctor came in to talk to us.  He then informed us that they couldn't help us there because their radiology staff left for the day.  After waiting another 10 minutes for release papers, we were on our way to Primary Children's ER.  I was a bit frustrated at this point since there were several opportunities in the communication chain where they could have told us they couldn't help us and limit how much time we wasted there.

At Primary Children's, they checked us in pretty quickly and we were able to head directly to radiology.  While we were waiting for the radiologist, I talked to the rad. tech about C-arms (the type of x-ray medical equipment my workplace develops).  I learned some things about their product preferences.

Brida had a tough time with this new tube placement.  The Radiologist had some difficulty getting the tip of the catheter in the jejunum, so it took longer than the other placements.  The whole process took about 20 minutes.  For some reason, the radiologist decided to put in a smaller catheter than the previous tube (from 8 Fr to 5 Fr*).

We eventually made it home around midnight.  Brida was wide-awake when we got home, but she eventually went to sleep and slept through the night.

Brida also had her first pediatrician appointment on Monday.  That went well.  She continues to gain weight every day:

   7/19: 3.77 kg
   7/20: 3.775 kg
   7/21: 3.79 kg
   7/22: 3.845 kg
   7/23: 3.935 kg
   7/24: 4.030 kg

(*Note: Fr stands for French units.  It is the standard unit for catheter diameter measurements.  1 Fr = 1/3mm.)

Thank You Kristin, Tami, Debbie, Laura, and Stacey

Thank you Kristin for the Chicken Taco Soup on Tuesday.  We've never had this before.  I wouldn't think of having tacos and soup in the same recipe, but it was quite good.

Thank you Tami for the Thai food on Wednesday.  This meal hit the spot for us adults.

Thank you Debbie for the Chicken Pot Pie and Peach Cobbler on Thursday.  If you are reading this, please pass on the recipe for the pie.  Erin has her own recipe that is a favorite of mine, but Erin wants to try your's because of the great crust.  

Thank you Laura for the Chicken Alfredo, salad, and cookies on Friday.  Every one in the family liked this meal.  The kids asked for seconds.

Thank you Stacey for the pizza, salad, and ice cream on Saturday.  The pizza was great.   My in-laws said it was "outstanding"

First Cardiologist Appointment and Second Swallow Study

Brida had her cardiologist appointment and swallow test on Friday.  Her cardiologist said she was looking good and her weight gain is "on track".  She had an ECG done and everything looked good there as well.  Brida did not appreciate all the wires though:

Brida failed her swallow study.  She was able to drink more than during her first study, but she eventually aspirated silently.  This means she will need to keep her N-J tube in until her next study on 8/3.

Earlier in the week, Brida had her first bath at home.  We had to take a picture for her future embarrassment:

We allowed Maggie to hold her sister for the first time this week.  The only problem with this was that she didn't want to let her go.  We will think twice before we do this again :-).

Brida went to church for the first time this morning.  She slept during the whole Mass.  Some friends from church got to meet Brida.  The unanimous opinion is that she is adorable.  This week Brida will be meeting with her pediatrician for her first check-up.

New Feeding Tube

Yesterday, Brida decided that she no longer wanted a tube down her nose, so she pulled it out.  She then took a car ride back to the hospital ER to have a new one put in.  Earlier in the day she was visited by her nurse who checked her out.  He said she was doing well and her heart sounded good.

Today she was visited at home by a speech therapist, who worked with Brida to get her ready for another swallow study at the hospital on Friday.  She said Brida is doing well and creating good pressure to swallow.

Brida is making good progress with her weight.  I am not convinced that today's measurement was accurate since it shows a whopping 140g increase in weight from yesterday, but we will know for sure tomorrow.

   7/16: 3.59 kg
   7/17: 3.62 kg
   7/18: 3.76 kg

Thank You Laurel, Karen, Cara, Carol, Callie, and Mike

Thank you Laurel for the Chicken Tetrazzini last Monday.  We all loved it.

Thank you Karen for the chicken wings and potato salad.  The celery and ranch dressing was a nice touch.

Thank you Cara for the Burritos and macaroni & cheese.  These have lasted us dinner and several lunches.

Thank you Carol for the lasagna.  I have also had this for several lunches and it tastes great.

Thank you Callie for the shepherd's pie, bread, and brownies tonight.  You picked out some favorites for each of us.

Thank you Mike and your son for mowing our lawn this weekend.  You guys went above and beyond by doing the edging and even doing two perpendicular passes with the mower.

First Weekend Home

Brida had a good first weekend home.  She gained a total of  90 g through Sunday, but she isn't very consistent with her weight gains.  Her weight measurements are below:
  7/14: 3.50 kg*
  7/15: 3.59 kg
  7/16: 3.59 kg
  * There was a +10 g difference between the hospital's scale and our home scale, so there was no weight gain between Friday and Saturday.

Brida has been doing a lot of sleeping and hasn't had any notable health issues.  Her O2 sat. levels have been between 75-90%.  Thankfully, she has been sleeping through the night for Erin and Sam, unfortunately Maggie didn't receive the same memo (she decided to wake and stay up at 4AM this morning).

7/13/12: +70 g...Time to Go Home!

Brida gained an impressive 70 g the past day.

  7/10: 3.43 kg 
  7/11: 3.41 kg
  7/12: 3.42 kg
  7/13: 3.49 kg


When Erin got to the hospital today, Brida's nurse notified her that they plan to discharge Brida today because of her good progress over the last day.  Erin was given the remainder of her trainings, including instructions on how to use the feeding pump and accessories.  


At around 5pm Erin and Sam started packing Brida's stuff up and got her in an outfit for the ride home.

Brida had an uneventful ride home.  Her sisters were very excited to have Brida home.  The nurse arrived at the house at the same time as Brida, so her sisters couldn't spend much time with her before they had to go to bed.


Welcome home Brida!

7/12/12: +10 g

Brida gained 10 g on Thursday.  No other significant updates for Thursday.

Deja Vu

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg 
  7/9: 3.41 kg 
  7/10: 3.43 kg
  7/11: 3.41 kg


Brida has decided that she likes the number 3.41 because her weight keeps going back to it.  The nurses bumped her calories back up to 27 kcal today to see if she can tolerate it now.


We got her kidney ultrasound results back today.  It looked like she has a mild constriction in one of her calices (tubes exiting out of the kidneys).  This could ultimately lead to an infection, so they decided to run another test in the cath lab.  Brida hated this and is starting to not like the radiologist so much.  The cath lab test confirmed the ultrasound results.  The conclusion is that they may have to put her on antibiotics at some point, but she should be OK for now.  The constriction may resolve itself in a year's time.  

Weight Gain

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg 
  7/9: 3.41 kg
  7/10: 3.43 kg


Brida gained 20 g in the last day.  We are hoping that this means she is back on track.  If she keeps it up, she may be able to come home by end of the week.  She hasn't had any spit-up episodes today either.  She has slept for most of the day.  They have zeroed in on 24 k-cal formula/milk at a flow rate of 21cc/hr. They will keep this steady as long as she continues to gain weight.


Brida had an ultrasound of her kidneys today to make sure they are functioning properly.  Results are expected tomorrow.  


Erin spent her afternoon with Brida.  Sam went back to work.  Sam and Erin visited her for a couple of hours after work.  Other than that, no more updates to report for today.

Still Trending Lower

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg
  7/9: 3.41 kg


As can be seen above, Brida's weight continues to trend lower.  We are now playing the waiting game as the nurses try to figure out her feeding schedule and calories.  She only spit up once for us today, which is a significant improvement over yesterday.


Here is a video from today when she had hiccups:

Additional Updates:

• Yesterday they took out Brida's last IV.  It got clogged and they decided that they don't need it any more since all the meds she is on can be given through the NJ tube.
• For the first time since surgery, they were able to drop her O2 flow rate.  This morning they dropped it from 0.12L/min to 0.06 L/min.  Then around noon they dropped it again to 0.03 L/min and she is maintaining her oxygen sat. levels around 85-90%.

6:00 PM Update:

• At around 4:00 they turned off her oxygen completely and her O2 sat. has not changed.  This is a good sign that she may not need oxygen when we get home.

Lost Weight Again

Brida lost weight again from yesterday to today.  This resets the clock from when she can be scheduled to come home.   The nurses are struggling to balance the volume of fluid and calories so as to help her gain weight, but not so much as to overburden her heart with additional demand.  Over the last three days she has lost about 40 g a day (she should be gaining 20-30 a day):

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg

They made another adjustment to her calories today and we should find out tomorrow if it has helped or not.  Her stools have also increased in frequency.  The nurses think it may be too much, which explains the weight loss.  She has also continued to spit up (emesis).  The spit-up wasn't as frequent or large as yesterday though, so we are hoping this is a positive sign.

Other than these two issues, Brida is doing well and is healthy for her condition.  She is also staying awake for longer and longer periods of time each day (30-60 minutes each time).

Today Brida was visited by her family, including her grandparents.  Her sisters are looking forward to having Brida at home.  They have been fighting over who gets to hold Brida first.

Thank You Natalie, Amy, Kristin, Lisa, Michelle, Julie & Sean, and Katy

Thank you Natalie for mowing our lawn last Saturday.  You can mow a lawn as fast as any guy I know!

Thank you Amy for the two meals this past week.  The pizza is the kid's favorite and tonight's lasagna and desert bread were also great.  What kind of bread is it?  I think it is carrot cake/bread, but Erin thinks it may not be.  It tasted great...can you pass on the recipe?

Thank you Kristin for the Asian Chicken Salad and cupcakes on Monday.  Erin and I brought leftovers with us to the hospital on Tuesday and it was a great lunch for us.

Thank you Lisa for the Beef Enchiladas and Quinoa on Tuesday. I've only had Quinoa once before (prepared differently) and this recipe tasted great.

Thank you Michelle for the Ribs, Potatoes, Macaroni & Cheese, and Cupcakes on Wednesday.  This was my favorite meal of the week.  Everything was full of flavor and was prepared like it was from a skilled chef.  You should consider starting a catering business.

Thank you Julie and Sean for the taquitos, bean salad, and cake on Thursday.  This was another great meal.  I loved the taquitos and Erin especially commented on how good the cake was.

Thank you Katy for meat and pasta dish, salad, and desert last night.  Erin and I brought leftovers with us to the hospital today and it tasted just as great as last night.

Thank you all for putting in all the effort to help us out during this challenging time for our family.  We know it isn't easy taking extra time out of your schedule to plan and prepare an extra meal (or mow an extra lawn), but it really has helped us and our in-laws make this a less strenuous time for our girls.  You have enabled us to spend more time with them (especially Brida) and less time thinking about and preparing lunch and dinner.  You are an answer to many prayers!

Slight Setback

Brida lost weight from yesterday to today, so her discharge has been delayed.  The earliest she will be discharged now is on Monday assuming she gains weight the next couple of days, but we are guessing it will most likely be Tuesday.  They also delayed the delivery of equipment to our house.

The nurses increased the calories in her feedings today to try to increase her weight.  She has started to spit up stomach fluids (twice when we were there today).  The nurses are tracking this, but we are told there isn't much we can do about it.  There is concern that if this continues she could aspirate these fluids, but they are taking an x-ray daily to look for fluid in the lungs.

No pictures today.  We forgot our cameras at home :-(

Discharge Delayed

Brida's discharge from the hospital has been delayed by 1-2 days.  They want to make sure she is gaining weight before she leaves.  She gained weight the last couple of days, but the staff wants to confirm the trend before releasing her.  They tell us she can be released as early as tomorrow, but possibly Sunday.

The discharge nurse has started the home health process.  We should be getting all her equipment delivered tomorrow.  The equipment and disposables will include:

• Oxygen tanks (portable)
• Pump for feeding tube and accessories.
• Pulse Oximeter
• Medications

A nurse should arrive at our house shortly after we do so that her feedings are not delayed.  The nurse will train us on using the equipment and make sure Brida is still doing well after the trip home.

Brida hasn't had any pain medications today.  She has been a little more ornery, but handling it well.  Other that that, there are no new updates on Brida's health.

Brida was visited by her parents and big sister Rosemary today.  Rosemary was given a special doll by the Child Life Specialists here for her to practice playing doctor.  She really liked giving it play injections and checking its blood pressure while wearing her face mask.

Getting Ready to Go Home

There is not much to report out today.  In celebration for the 1-week anniversary of her first surgery, Brida rested most of the day.  She didn't have any oxycodone and is doing OK with just Tylenol.  They do still have her on Zantac (as antacid for stomach) and Lasix (as diuretic to control liquids).  She will continue to be on these, Tylenol, and aspirin when she comes home.

In preparing Brida for the trip home tomorrow, the nurses had us do a car seat test to make sure she can tolerate sitting in a car seat for 30 minutes without affecting her vital signs.  She did well and slept most of the time.  The hardest part was getting her in and out (she didn't like that so much).  She also needed to have a shirt on for her comfort, so her first shirt was a baby hospital gown:

Tomorrow is another big milestone for Brida.  Erin and Sam are trying to get everything ready for her at home.  We are a bit behind the ball on this since we didn't expect her to come home a week after surgery.

Friday Discharge?

We heard today that Brida may be discharged this Friday if all continues to go well.  Erin and I are still trying to adjust to this thought. Today the nurses started to "train" us on caring for Brida.  The nurse reviewed how to use the feeding tube and how to administer medications and feedings.  The nurse also gave us a rundown of what to expect for the next couple of weeks.  We should be getting a call from "home care" people to schedule a time for them to setup our house with oxygen and the other equipment.

There has been no change in Brida's condition to report.  They are trying to wean her off of oxycodone, but she hasn't liked that so much...I probably wouldn't like it much either.  She is currently on 0.12 L/min of oxygen and they keep trying to bump her down a couple times a day, but her oxygen sat numbers drop each time, so they haven't been able to go lower.

Brida had a good visit from her sisters and grandparents today.  She was able to be held by her sisters for the first time.

Brida says Happy 4th of July! 

Discharge from CICU and Cath. Lab Trip Reports

Brida started her day with a visit from the speech therapist to check her drinking functions.  She has good sucking response, but the therapist wanted to do a swallow study under fluoro to see if she is aspirating any fluids (getting fluid into her lungs).  At the same time that Brida was scheduled for the swallow study at the cath. lab, the post-surgical floor found her a bed and they started discharging her from the CICU.

The radiologist (Dr. Hedlund) allowed Sam to join Brida in the Cath. Lab.

I told the radiologist that I work for GE Healthcare, but that I wouldn't hold it against him that he was using a Phillips machine.  Brida didn't mind this first trip.  She had a good helping of barium.  The results of the test were mixed.  She swallowed well, but after drinking for 20-30 seconds she fatigued and aspirated into her lungs a little. It was a "quiet" aspiration, which means she didn't cough when it happened.

After the swallow test, we went directly to her new room in the post-surgical floor.  The doctor visited and, as a result of the swallow test, decided to change out her NG Tube for a NJ Tube.  The only difference is that the NG ends at the stomach and NJ goes into her intestines.  The NJ will be better for her because she will be less likely to spit up and aspirate into her lungs.  Aspiration  would not be good for her since it can cause pneumonia and a much longer hospital stay.  The downside of the NJ tube is that she won't get any food in her stomach and will always feel hungry. Because of the aspiration, Brida will not be able to drink from a bottle until she increases in strength and has a second swallow test in 2-3 weeks.

Coming up to the floor, I also ran into Deacon Dale.  He came to visit after getting a little lost since Brida was in the process of being relocated.  Deacon visited us for a while and gave Brida a blessing before he left.

Brida enjoying her new room.

After hanging out in her room and being held by her dad, Brida was called down to the Cath Lab for the second time to have the NJ tube put in.  Both Sam and Erin joined Brida for this trip.

Brida did not like this trip at all.  They had to hold her down while the catheter was being placed.  She calmed down afterwards.

You can see the final catheter placement in the image above.


Room with a View and Alpine Fire:
Brida's new room has a pretty good view.  In the second picture you can see smoke from a big fire that is raging in Alpine (just SE of Draper).

Alpine "Quail" Fire

As a side note, does anyone know why they are calling this a "Quail Fire"?

Trip Report:

Laurent, FYI, I am totally using this as a working day and this post is serving as my two trip reports to the cath. lab.

RA Lines Out

They took Brida's RA lines (catheters to heart) out this morning.  We were able to hold her for the first time since the surgery on Thursday.  They had to give her another dose of morphine for removing the lines, so she was sleepy until the afternoon.  Once she woke up, she was looking around a lot.  Brida is digesting milk given through the feeding tube well.  Since the RA lines are out, she will not be able to receive TPN nutrients anymore. She will get all her nutrients from milk, and some occasional glucose through the IV when needed.

The nurses also notified us that Brida is now doing well enough that they expect her to be released to the post-surgical floor tomorrow.  The post-surgical floor will have l:3 nurse to patient ratio (compared with a 1:1 or 1:2 ratio in the PICU/CICU), but Brida will have a private room with a guest bed.

Before being released to the post-surgical floor, the Speech therapist will work with Brida on drinking.  They will probably do a swallow test using a radiolucent die under fluoro (live x-ray, hopefully using a GE/OEC C-arm :-) ) to check that her anatomy is swallowing properly.

Below is a video from today of Brida awake and looking around while being held by her dad:

Started Feedings

Brida started drinking again from a bottle today.  She didn't drink much.  They started her on 10 ml and they are increasing each feeding by 3 ml every 3 hours.  She drank 8 ml in the first feeding, 1 ml in the second, and 1 ml in the third. What she doesn't drink, they are giving her through a feeding tube (g-tube) which was placed this morning.  She seems to have the sucking down, but  she hasn't perfected the swallowing part.  They plan to have a speech therapist, who, as strange as it sounds, has the skills to help, work with Brida tomorrow on drinking.

Her swelling continues to get better.  Tonight they are stopping the morphine and switching over to oxycodone now that she is feeding.  Oxy is better in that it lasts longer with less side-effects, but it needs to be given with food since it can damage empty stomachs.  She is awake more often for longer durations each time (see video below).

They also took off the cerebral and renal oximeters today. If the feedings continue and she starts eating regularly, they hope to take the RA/PICC lines out tomorrow and then she can be held.

Sunday Summary:
We went to church this morning, had lunch, then we all (mom, dad, sisters, and grandparents) drove up to the hospital (in two separate cars).  Maggie fell asleep in the car, so Erin stayed with Maggie while Sam brought Rosemary and Mairead to see Brida.  The girls enjoyed their time with their sister (see video below).  They asked lots of questions and seemed to be good with the answers Sam was providing.  They also gave some interesting responses to questions Sam asked them (you have to see it in the video).

Sam then brought Rosemary, Mairead, and Maggie upstairs to play in the play room while Erin visited Brida with the grandparents.

Quote of the Day:
Dad: "Mairead, what do you think of Brida?  Do you like her?"
Mairead: "I like to touch her ear."
Dad: "Oh yeah? What do you like about her ear?"
Mairead: "It's a little bit feel moist."

Breathing Tube Removed!

Brida had another great day.  She accomplished the following milestones:

• Had her Foley catheter removed
• Had her chest drain removed
• Had one of her IV lines in her hand removed
• Had her umbilical line removed this evening
• And, most importantly, had her breathing tube removed and is now fully breathing on her own.  This is a huge milestone for Brida since this takes 1-2 weeks to happen in most children with HLHS and often takes longer.  Throughout last night they were weaning her off of the ventilator by dropping the ventilator frequency.  They turned it off completely this morning and she was breathing on her own for a while,  but she held her breath a couple of times so they turned it back on.  At noon, they removed the breathing tube completely and she has been breathing well since.  Below is a photo and video of Brida from this afternoon.

As can be seen in the photo, Brida's swelling has also decreased quite a bit.  They haven't needed to pump too many fluids into her so the increase in swelling that we were told would probably happen hasn't.  She is also moving a lot more and just starting to look around.

They still have her on a little extra oxygen to help in controlling her sat. levels.

She is scheduled to be fed from a bottle tonight to see how she does with that.  If she can keep the liquids down, they will remove her (RA/PICC) lines tomorrow, which is the last step before she can be held.

Saturday Summary:

The day didn't start off well for Erin and Sam.  Maggie, again, thought it was a good time to give her parents trouble.  She woke up at midnight (seems like she had a bad dream) and wouldn't fall asleep until 3:30 am.  

We had our lawn mowed this morning by Natalie E (thanks Natalie!).

Before lunch, we discovered that one of our sprinkler valve boxes was erupting with water.  I later diagnosed it to be a cracked valve.  I will try to fix this tomorrow.

Erin and Sam left to visit Brida after lunch. We were debriefed by Lisa, her nurse, on Brida's progress overnight and the great news about the breathing tube.  

Today the CICU was pretty quiet.  Brida's roommate was released to the post-surgical floor, so the staff decided to relocate Brida to a single room closer to some other patients.  She now has a room with a window:

Erin and Sam were then given infant CPR training by Lisa and provided a kit to practice with that includes a video and a practice doll.  They don't provide this to most patients, but since Brida is at a higher risk for needing CPR, it is mandatory training for parents before patients are sent to the post-surgical floor (where Brida will go to next once she is eating on her own and all her lines are removed).  We were also encouraged to give the training to any other future caregivers.

Erin and Sam left the hospital after 5:00 to get home to have dinner with the kids and have a birthday cake celebration for Erin's third-annual 30th birthday.  Happy Birthday Erin!

Thank You Lisa, Kristen, Kim, and Shannon

Thank you Lisa for the spaghetti and meatball meal on Tuesday.  Erin and I had leftovers for lunch yesterday and it was great.  The girls really like meatballs now, so they appreciated this meal.

Thank you Kristen for the pulled pork sandwiches on Wednesday.  I  had a couple sandwiches for dinner when I came home on Wednesday and liked them, especially the cole slaw.

Thank you Kim for the Quiche on Thursday.  I had a couple slices for lunch today and the crust was just right (not soggy).

Thank you Shannon for the Chicken tonight.  We all thought it was tasty and something we haven't had before.  The girls loved the smores...nice choice!

Friday Summary

We had a busy day today.  After spending the morning with Brida, Erin and Sam went to Rosemary's VBS presentation.  We then had lunch at home and spent time with the kids before heading back to the hospital around 4pm.  Dr. Gruber dropped by while we were there just to check on how Brida was doing.  Erin brought a couple of books to read to Brida, including "Are You my Mother?", which we thought was appropriate given her "snort" sound when she cries.

As an interesting side-note, as part of her chest drain, they now have a wet suction water seal drain connected made by Atrium Medical, a company I worked at for 3 months during a co-op stint.

Tonight will be the first night Erin and I will be sleeping at home since Sunday.  We will be giving the attending nurse a call to check in on Brida and then hope to get a good night's rest.

Health Update:
Brida is still ahead of schedule with everything.  They weaned her off of the Epinephrine today and they are gradually decreasing the ventilator frequency as Brida starts to breath on her own.  In the screen shot below, the black part of the top graph is the ventilator working and the grey is Brida trying to breath. The plan is to take her off of the ventilator tomorrow and then remove her breathing tube.  If all goes well, they will start removing the IV lines this weekend to reduce the infection risk, starting with the PICC lines.  Once the PICC lines are out, she will be able to be held again.

Great Night

Brida had a great night last night.  Her body started to react to the trauma as expected, but not as much as usual.  They were able to stop a lot of the medications during the night.  She is now only on 3 or 4 medications (she was on 10 last night).  She is now on Epinephrine (for her blood pressure), morphine (for comfort), and Furosemide/Lasix (diaretic to increase urine drainage to reduce the edema).  This morning she started moving and being responsive to touch and noise.  She is also starting to breath on her own periodically.

The nurses have raved about how quickly she is progressing.  Since they were able to close her chest last night (which is not typical), she is about 3 days ahead of schedule.  Her swelling (edema) has also surprisingly decreased.  We are told that this will probably get worse over the next couple of days as they continue to administer fluids and medications.

Erin and I are now going to leave the hospital to attend Rosemary's VBS performance at the church.  I will update this post later with pictures and some more content later today.

Update:
Below is a link to post-surgery photos and a video. CAUTION: If you are not comfortable seeing post-surgery images, I suggest you not follow the link.  You will also want to use best judgement with younger children.

Post-Surgery Photos and Video

Success!

7:15pm: Just had the debrief with Dr. Gruber.  He happily reported that the surgery went extremely well without any notable issues.  He noted that the aorta was extremely small (1.5mm) and this case went as well as any HLHS case he as done with an aorta that small.  Brida is getting an x-ray done now to confirm catheter placements.  The edema wasn't that significant, so he decided to close her chest up (they often keep the chest open for a day until the swelling is decreased).

Dr. Gruber noted that Brida is a fighter.  Usually there are issues with either pressures or arrhythmia, but she had neither.  They put her into circulatory arrest for 41 minutes (the maximum is 60 minutes) while they performed the complex parts where they couldn't have motion.  They protected the organs by systemic hypothermia.

He noted that we are not out of the woods yet because all HLHS babies struggle about 6 hours after surgery once the heart realizes the trauma it has received (kind of like how we feel good after a hard workout, but really ache that evening).  She will be on a ventilator for at least a couple of days (best case) and lots of drugs to maintain oxygen sat and pressure levels.  She will be sedated and won't be moving for at least a day.  We have been warned (and observed with other patients) that there will be lots of inflamation and she won't look the same (especially with all the tubes coming out of her).  If all goes well, they will start to wean her of the drugs and ventilator this weekend and try to get her to move tomorrow.

We expect to be invited back over to the CICU by 8:00 once they have her stabilized there.

Erin and I are elated at the great news.  Thank you all for your prayers!  God is great!

OR Update #4

6:10pm: Nurse said Brida is now off the bypass machine and they are checking for leaks.  After the leak check, they will close her up.  She said Dr.Gruber will debrief us in person in 30-45 minutes, but said everything was going "very well".

OR Update #3

5:00: Nurse says Brida is doing "very well".  She is still on bypass.  Next update expected in an hour after she gets off of bypass.

OR Update #2

3:20: The nurse called and said they just got Brida on the bypass machine.  Everything is still OK.

4:20: Forgot to mention that the next update was expected in 1.5 hours from the update at 3:20.  Should be getting the next around 5:00.

OR Update #1

3:00: Just got a call from the OR.  They just completed the first incision.  They had some trouble putting in another IV line (which Dr. Clark warned us might happen), which delayed things a bit.  They expect to put her on the heart-lung bypass machine within the hour, after which we will get another update.  The nurse said everything is going OK.

Surgery Starts

They took Brida into the OR at 1:00.  We were prepped by the Anesthesiologist (Dr. Clark) and his resident on what his role is and some details on how he approaches these cases.  Erin asked about his experiences with these complex cases and he said he trained at Children's Hospital of Philadelphia (CHoP) and worked with Dr. Norwood, the surgeon that developed the Norwood Procedure that Brida is having today.  Dr. Clark has assisted in over 200 of these HLHS procedures.  We signed another authorization form for him to administer anesthesia.

Dr. Gruber and his PA then came by and checked in.  They gave us a beeper for them to reach us with updates.  Dr. Clark and some other hospital staff then escorted Brida and us to the surgical floor.  We got a chance to give Brida a kiss before she headed to the OR.  Erin and I then walked down to the surgery waiting room where we are now waiting for the updates (and praying for a successful surgery).

Still Here

We are still here holding Brida.  The other surgery isn't out yet, but we are told it is wrapping up momentarily.  We just gave our consent for the surgery.  Once they take Brida to surgery, Erin and I will move to the surgical waiting area for hourly updates.

Update: We just saw the other patient get wheeled by...should be soon.

Spending Time with Brida Before Surgery

We had dinner at home last night.  While Erin was being discharged from the U, Sam brought Mairead to t-ball.  We are trying to keep things as normal as possible to limit how this experience affects the girls.  After dinner, we put the girls to bed and drove back to the hospital to stay in one of the overnight rooms.  We got up earlier than our bodies wanted to be with Brida before surgery.


Brida had no issues last night.  Her O2 sat. levels are back in the lower 90's.  They had to put a foley catheter in her yesterday because her bladder wasn't draining.  This isn't a big deal since they needed to put one in today anyways for surgery.

We sat down with the surgeon yesterday afternoon.  He said he is leaning towards doing putting a Sano shunt in instead of a B-T shunt.  He said that her aorta is smaller than usual for this condition and data indicate that a Sano might be better, but he is going to make the call when he sees the anatomy better during surgery.

We don't have any more news on the surgery time.  The best guess at this point is that they will start to cart her over at 11:30 (MTN).  I will try to post when that happens.  I know I don't need to remind everyone of this, but prayers are needed today.  The most strenuous time will be during surgery and tonight after her body realizes what has happened to it.

Thank you all for taking the time to follow Brida here and for your prayers.  They are definitely being felt by Erin and myself.

Update: Here is a video of Brida just before surgery.

Surgery Delayed until 11:30 AM

Dr Gruber needs to support another case in the morning that starts at 7:30.  He thinks it may be quick, but it may not be.  We were given a pretty broad window as early as 11 am and as late as 2pm (MTN).  Please keep Brida in your prayers throughout the day.

The Surgery Has Been Scheduled

Brida's first surgery has been confirmed for Thursday (tomorrow) morning at 7:30 am (9:30 EST) with Dr. Gruber.  Please focus your prayers during the surgery tomorrow for a successful outcome.

Last night, the staff removed Brida's "unicorn" IV from her head and placed a new one in her left hand.  They weren't sure if the one on her head was placed optimally and they need high-quality lines for the surgery.

Erin and Sam spent most of yesterday evening and this morning with Brida.  Sam got her to drink some from a bottle, but she spit most of it out during the feeding and after we left.  They had her on a very light feeding schedule to limit how much energy the stomach is consuming.  Because she spit up the milk yesterday, the doctors decided to suspend feedings for now and rely on the nutrients from IV (TPN fluids and lipids).

We have been meeting lots of hospital staff the last couple of days (it seems like a new one drops by every 10 minutes).  These are staff that will be caring for the baby after surgery and other support staff for us.  They have been very helpful in explaining the process we will be going through the next month.  

Because of the surgery tomorrow, the hospital has arranged for us to stay in one of their 6 beds reserved for parents tonight and tomorrow night so we can be with the baby as much as possible before and after surgery.  Erin is being discharged from the U this afternoon, since she has been given a good bill of health.

We took a couple more videos this morning.  Here is one of them:

The Baptism

Today Brida was Baptised, Confirmed, and given the Anointment of the Sick by Monsignor Moore.  In attendance were Monsignor Moore, Erin, Sam, Grandma Kearns, Grandpa Kearns, and sisters Rosemary, Mairead, and  Maggie.  The Baptism went well.  Brida was surprised that a cold liquid was being poured on her head and she let us know about it, but calmed down by the end of the sacraments.  

Today her sisters and grandparents met Brida for the first time. The sisters were very curious and mostly quiet, but in a good mood.  Mommy did a good job preparing them for what to expect before they came into the room.

Earlier in the day Sam got to hold Brida for the first time:

Other Interesting Notes:

• We have been told by numerous staff that Brida stops traffic because of her cuteness.
• Brida already has a signature sound: she makes a funny snort sound when she cries and makes you laugh when you hear it.  We will try to get a video of it as soon as we can.

Update on Brida's Health and Surgery:
Today Brida's O2 levels were higher (97-99%), which we were told is a sign that the lungs are getting too much perfusion.  Too much perfusion may lead to breathing difficulties and some lung damage, so the cardiologist said they will need to get her into surgery this week, but this is not abnormal for her condition.  We don't have a specific day for the surgery yet, but we are told it will be Thursday or Friday.  They need to reschedule someone else's surgery and confirm before they give us a day.  Because of her condition, they are prioritizing her surgery over others.

Thank You Johanna

Thank you Johanna for organizing the meals for the family.  Your first meal last night got rave reviews from the in-laws.  Mrs. Kearns brought me some leftovers for my lunch today and it tasted great.

And Her Name Is...

Brida Elizabeth Akins

Videos Uploaded

I uploaded two videos from yesterday to the "Day 1 Summary" post below.

First full echo

We are visiting the baby in the CICU. Just finished the first full echo. Mom and dad are getting to hold her.

Day 1 Summary

We had a great day yesterday.  Baby Akins has been doing very well.  Erin and I want to thank EVERYONE that has been praying for the baby.  We are certain that your prayers have given her the strength she needs to do so well.  She is 19" long and her diagnostics are looking good.  Her O2 levels are between 87-93% (which is excellent for her condition).  Below is a timeline for last evening, including pictures.

5:05pm: After birth she was immediately given to the NICU at the UofU Hospital where they stabilized her and gave her IVs for medication, fluids, and monitoring.  This process took about 3 hours.

6:30pm: Mom and Dad were relocated from the delivery room to a maternity room.

8:00pm: Mom and Dad were invited to visit the baby in the NICU.  We got our first pictures with the baby and shot a video.  The baby looked great and we got an update from the doctors and nurses there.  Rumors got around that Erin was a "Rockstar" for her quick and flawless delivery.

Here are the videos:

9:00pm: The Life Flight team arrived to transport the baby to Primary Childrens.  This took a while since the team had to reconnect the baby up with different equipment for the trip and they had to be very careful to not move any lines.  Baby got her firs t-shirt, which we were told will be the most expensive t-shirt she will ever have.  The trip to Primary Childrens went well without any issues and Baby enjoyed the ride in her baby-mobile (it's better than the Pope's).

9:30pm: We arrived at the PICU at Primary Children's.  Sam was there for the introductions with the PICU staff and the report-out from the Life Flight team.  Sam had to leave around 10:00 to go home to help Maggie.  Maggie decided it would be a great time to have nursemaid's elbow.  After Sam left, the staff said that Erin could hold the baby (which was unexpected).  The staff took some pictures for Sam:

10:30pm: Erin was out past her curfew, so a nurse brought her back over to the UofU Hosp.  Sam made it home and fixed Maggie's elbow and then drove back to the hospital.