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.  

First picture with mommy

Priceless...

Just moved

We are now in another room getting cozy. At least we have a view. The baby is still ok. They were able to get iv lines in Ok.

And she weighs...

Just got the report back that she weighs 7 lbs 5.9 oz.

It's a Girl!

Born at 5:05 PM (MTN).  She is doing well and we expect another update from the NICU soon.

Getting closer

Contractions are a minute apart. Mommy is not so happy.

The window

This is the infamous window through which they will pass the baby to the NICU.

And We're Off...

We arrived at the hospital safely, albeit 30 minutes late.  I am connected to the Pitocin and small contractions have started.

The Journey Begins...

Tomorrow is the big day.  Erin and I are scheduled to arrive at the University of Utah Medical Center at 9:30 AM (MTN).  Shortly thereafter the induction process will start. The labor is expected to be normal, but as soon as Baby Akins is delivered, there will be a very large team in the room checking the health of the baby.

The hospital staff will administer medications and perform an echo-cardiogram to check that the PDA and ASD are open and to get a better look at the anatomy.  One of the medications, Prostaglandin E1, will help to keep the PDA and ASD/PFO open to maintain blood flow between the left and right side of the heart.  Without this blood flow, the heart will go into arrest.  If all looks good, mom and dad should get 1-2 minutes to hold the baby.  If there are any issues, the baby may need to be rushed to the catheter lab for an interventional procedure to open up the ASD and/or PDA.  


After the health evaluation, the baby will be carted over to Primary Children's Medical Center (which is connected to the UofUMC) and monitored at the PICU.  At the PICU, the baby will be connected to lots  of equipment to monitor the baby's health until surgery.

Surgery should take place on Wednesday or Thursday, depending on how the baby is doing.  Before surgery, the baby can be held by family and friends.  The baby will be vulnerable to viruses, so contact with children will be restricted. The baby's big sisters will be able to visit, but only for shorter periods of time 5-10 minutes. 


We have scheduled a baptism with our Pastor, Monsignor Moore, for Tuesday at 2:00 in the hospital.
Erin and I want to thank everyone for there support over the last few months as we have been preparing for this journey.  Erin and I will be posting here as often as we can to keep everyone updated.  Please keep Baby Akins and his family in your prayers tomorrow.