Discharged and Smooth Sailing


After a bumpy surgery day and a brief fever (which broke while Momma was holding her), Alida had a quick recovery. She was discharged on Friday afternoon! After our last 45 day stay, this was amazingly quick. We spent the night in Milwaukee on Friday and came home on Saturday.

She has refused pain meds since Wednesday afternoon and you would never know. She has great range of motion in her arms and doesn’t seem bothered by her incisions or healing sternum. We are trying to keep her from climbing, fighting with her sister, and getting pushed over by the dog. She is resilient, strong, and courageous.

Thank you all again for your support, thoughts, and prayers. It has been nothing short of absolutely incredible!

Midnight Reflection

It’s 12:24am. I just got back to the Ronald House from the hospital. Alida spiked a fever of 102 and was clearly restless. They decided to do labs at midnight to do a culture. So I decided to see if holding her for a couple hours before her labs would help her rest. It did. She played with my necklace that reminds me of an angel wing and fell fast asleep. As I held my little peanut, I was overcome with emotion. For the first time in almost a week, I cried. I really cried. And since writing is always therapeutic for me, I decided what better time to put my thoughts into words. At 12:30 in the morning. It may not make complete sense, so bear with me.

I had felt emotionally strong and almost closed off the last few days. Historically being a rather emotional person, this felt odd to me. Oh, your daughter just coded. Huh, interesting. They have to reopen her sternum? Oh, this is practically humorous. A friend told me I would cry when the adrenaline wore off. I think she was correct. But the emotions I felt tonight were not what I expected. I expected to feel, “oh my gosh, I almost lost my little girl – again – I can’t keep track of what number this is” and “how could they make such a ridiculous mistake?” and “why her!?” and “haven’t we been through enough!?” While these thoughts did pass through my mind, they were more like observations and potential thoughts; they weren’t what really settled in my soul. 

What really shook my soul tonight was this: how did I get so lucky? I am so grateful, it aches. It brings another flood of gut wrenching emotion as I write this. I was holding the most amazing, beautiful, strong warrior in my arms tonight. She has taught me so much about what is important in life. She has taught me a lifetime time of lessons in such a short period. Wow. The last two years have changed my life in immense ways, because of two little people we were blessed with. Not only do we have an incredible heart warrior, she has an amazing twin sister. Today we brought Lucie in the room only briefly as she has a stuffy nose. Lucie immediately spotted a stuffed animal and balloon on a table. She squealed with delight. She knew it was for Ali. She grabbed it and ran it to Alida’s bedside. I lifted her up and she tucked the animal under Alida’s arm. She went to rub Alida’s abdomen, instinctively knowing that is where she is hurting. I told her to touch her head instead. She planted a kiss on her sister’s forehead and touched it with her hand while saying “rub, rub, rub” – that’s what we do when we have an owie. Brian and I looked at each other and choked back emotion. Then we had to take a crying and upset Lucie out of the room. Watching their love (and arguments) will be an incredible journey.  

The people in our life. Most of them I didn’t know before the girls were born. The flood of prayers, thoughts, energy, and love we have received has been overwhelming. We have meant so many incredible, genuine people in the last two years. We wouldn’t have met most of them if it wasn’t for a career change due to the girls. I think part of why I have been so strong the last week is because I knew these people were all cheering Alida on, and because I know God has our back. He knows how to show us what’s important and lead us down paths that may seem foreign, frightening, and unbearable. But He helps us through to the other side, stronger, more open, and even more grateful than before. 

A journey of growth. Our careers have lead us down a path of self development. It’s been hard and rocky. It hasn’t been easy for me to take a hard look inside and realize I struggle with self love and work tirelessly and perfectionistically at doing a million and one things in an effort to achieve a ridiculous standard I set for myself in hopes of finally feeling like I can love myself. I am learning how to show up and say this is me. And I am okay, more than okay. Eating a chocolate muffin at 1am does not mean I have ruined weeks of eating right and working out. This struggle and learning how to be vulnerable and authentic with myself will help me set an example for two little girls that are watching and learning everything I say and do. 

This same journey of growth has lead us to living a life with passion, purpose and intention. We only get to live each day once. Be present. Don’t wish away years, months, weeks or days. Holding Alida tonight was a very precious moment for me. I missed out on so many nights of holding her as a baby, I sure as heck wasn’t going to wish away tonight by saying, “why her!?” I cherished every moment knowing that by holding her I was pouring love and energy into her that no one else could give her. I studied her long eyelashes, her sweet puffy lips, all of the pokes and scars on her arms and legs that reflect her determination and strength; I held her little feet in my hand and thought about all of the great things they will allow her to do in her life. Walk. Run. Dance. Meet new people. Travel the world. Walk down the aisle. Oh baby girl, what a life you have ahead of you! 

It’s so easy in our electronic, multi-tasking, more is better world, to rush around, missing moments, missing life. Stop. Breathe. Enjoy life. Enjoy the little moments. Don’t spend your days on the side lines. Start living. Have gratitude. Always. There is always something to be grateful for. 

It’s now 1:15am. My tissues and chocolate muffin are gone. I think that means it’s time to go to sleep, in a bed that I am very grateful for, and wake up tomorrow to see what opportunity awaits. 

Post Op Day 1

Well, it sure is different dealing with post op of an open sternum surgery when you are dealing with an otherwise healthy 20 pound girl as opposed to a 7 pound girl with premature lung disease. 

Alida has had a terrific day, one the doctors and nurses are thankful for after yesterday’s surprises. After waking this morning, Alida’s chest tube was removed along with the temporary external wires from the new pacemaker. Then her catheter was removed. Then her arterial line was removed from her left hand. Then her pacemaker was calibrated and tweaked. Then her central line was removed from her neck. Then a capped off IV was removed from her right foot. Then her renal and brain monitors were removed. Then her oxygen was turned off. Yeah, all of this subtraction on Day 1 is a good thing!

She’s doing really well. Her pain has been managed as needed throughout the day. She was given a dose of lasik which is a diuretic and that helped greatly with her puffiness by ridding the extra fluids from surgery. 

She’s been resting comfortably all day but her highlight was spending some quality mommy cuddle time outside of her bed. Heidi was able to hold her for a long time!  She also got a visit from her twin Lucie and even ate some applesauce and ice cream!  Papa and YiaYia Fish have been here the whole time and spoiled the girls with some stuffed puppies today. Lucie picked the first one and then handed it to Ali in a precious twin moment. 

Everything is going better than expected. We will still spend the night in the ICU tonight but our prognosis for leaving by the end of the week looks good. She only needs antibiotics for the first 48 hours post surgery. 

As always, we are grateful for the well being of our sweet Alida. The staff and facility at Children’s is second to none. The Ronald House is amazing. And the support, love, and positivity we receive from all of our family and friends is beyond compare. We love you all!


In the ICU

Everything went fairly well with the surgery. After they had her closed an X-ray revealed the pacemaker moved (long story short), so they had to go back in, including reopening her sternum, to put in a mesh patch to keep it in place. 

The nurse said, “I don’t know how she is at home but she sure keeps us on our toes here.” In my mind I can imagine Alida giggling because she purposely moved the pacemaker out of place just to throw the team for a loop. 

She is in the ICU now. I have been pretty strong all day. But seeing her in the ICU and having her wake up and cry was very hard. As she cried and held her breath to the point of making her oxygen saturation drop to 64, I could feel the wind being sucked from my lungs too. I think recovery is going to be very different than when she was a baby. It’s so hard to watch her and not be able to help or explain what’s going on. One day at a time. That has always been our mantra. And this time around we will add: there is always something to be thankful for. Always. 

She kept coming out of sedation so they turned up her meds to keep her calm and sleeping through the night. She still has a chest tube, central line, arterial line and an IV. As she recovers and those are removed, she will feel more comfortable. For now Grandma and Grandpa Fish are going to entertain Lucie while mom and dad get some exercise and rest.  




Back to the Waiting Game

We had a short notice yesterday, but managed to make it to Milwaukee in time for all of the pre op appointments at 3pm. It was the usual routine: wait, RN discussion, wait, vitals, wait, another discussion, wait, attempt echo, wait, X-rays, wait, lab, leave! Alida has been very resistant to any kind of exam or diagnostic (can’t really blame her), so they weren’t able to get an echo yesterday and decided to not do a sedated one. We had a wonderful dinner with the girls, Jonna Pinion and her daughter Nyla. 

We were at the hospital bright and early at 6:30am. We went through all of the same check in routine as we have in the past. Throughout the vitals her HR stayed in the low 50’s, even while crying. This showed her heart was not being paced at all by the pacemaker, as suspected. We were able to get some oral versed in her fairly easy. She became goofy and floppy. It was quite cute. 

Then we exchanged kisses and hugs and handed her over. It’s never easy. But we know she is in excellent hands. We got Lucie breakfast after being ever so patient. Then we met with Dr. Mitchell; he is the surgeon that did all of her prior surgeries. He informed us of a “situation.” When they sedated her it caused her heart to slow and stop. Luckily they were in the OR and able to shock her heart back into rhythm and then turn up her pacer quite high to keep her paced. Thankfully they didn’t sedate her for the echo yesterday because they wouldn’t have been as prepared for this to happen. I try not to think too much about this whole situation because it makes my stomach churn. 

They are going to do a full sternotomy (opening her sternum/breastbone). That’s where we are at now. Then they will replace the pacer wires and unit. They will also likely close off her pulmonary shunt while they are in there. She will be done sometime this afternoon. We will keep everyone updated. The love and prayers has been overwhelming! We appreciate each and every one of you! Thank you!!

An Update and a Road Bump

Well it’s been quite awhile since we have posted an update!

A lot has changed since September 2014…

Progress was slow in trying to get Alida to take food and liquid orally. Then in January 2015, Lucie turned the heater up in their room just before bedtime (without us noticing), causing them both to sweat all night. Alida woke up in the morning, presumably dehydrated, and started drinking from a bottle. It was crazy. We went out for breakfast that morning and she ate food. From that morning on, she never had anything via G tube again. It was like a switch was flipped. The G tube was removed in March. Our hope had always been to have it removed before kindergarten. She far exceeded that hope!


Eating orally also ended the vomiting and naturally increased her strength and stamina. She started walking that spring. Her motor skills and verbal skills are still a little behind Lucie, but she has made incredible strides. They are now getting into typical twin behavior – giggles, playing, pushing, and hair pulling. It’s fun to watch them develop that bond. They turned two on 7/24/15 and are definitely showing their independence and strong will.

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She recently had a pulmonology and cardiology appointment. Everything is looking great. Her oxygen saturations (when they are actually able to get her to sit still) were up to 98/99! This means her heart is doing really well and future heart surgery is very unlikely. Her right ventricle is pumping sufficient blood to her lungs which allows for sufficient oxygenated blood to the body.

Her cardiology appointment was Monday 10/12/15. Then she had a routine pacemaker check-up on Thursday 10/15/15. Monday her heart rate seemed normal. Thursday the tech couldn’t detect the atrial lead wire. When she was crying, her heart rate would stay around 50 (it should be more like 150/175 when crying). After a chest x-ray and an EKG, they discovered the wire was fractured. They turned up the ventricular lead to compensate and had us come back on Friday 10/16/15. By that time, for whatever reason, the ventricular lead also stopped working. Her heart rate was a constant 50, which meant the pacemaker wasn’t pacing her at all. Thankfully she has that underlying heart rate.

Because there are two failed leads, they feel it’s best to replace the entire system (pacemaker and all of the leads). Since she is small and they are redoing everything, this will require them to open up her sternum (there is a very small chance they won’t have to, but it’s unlikely). We are headed to Milwaukee tomorrow (Monday 10/19) with the procedure scheduled for Tuesday 10/20/15.

Our hearts are heavy and we have lots of mixed emotions. It’s a very helpless feeling to know that Alida is doing so well, but she still has to be opened up because of the pacemaker. We thought we were past major surgeries – especially anything that included a sternotomy.

But there is always something to be thankful for. Always. She’s alive. She is doing incredibly well with her development. She has that underlying heart rate that kept her safe even when her pacemaker failed. Her good health will help pull her through this surgery quicker. She is strong, determined, beautiful and courageous. She has an incredible and contagious spirit. And we know that He will keep her safe and us strong. We are so thankful that we can go down as a family to be with her. We are thankful for all of the support from family and friends.

Dealing with a toddler post operatively will be quite different than a 7-pound baby. She is very active and has no interest in sitting still. If you turn around she usually ends up places like this:


We will keep everyone posted via our blog as we did last time. Thank you for your ongoing thoughts and prayers.

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Ronald McDonald House Family Film


This is the culmination of a project we have been working on for a long time.  Heidi and I have been working with a talented filmmaker from Marshfield, Sam Karow, to tell our family story as it relates to the Ronald McDonald House.  We are very pleased with the result and decided to launch its “World Premiere” right here on our blog.  Everyone following this blog already knows our story so it shouldn’t need much of an introduction.  Here you go!  In order to access the private link you will need to use access code:  1234

Make sure to watch it on a full screen with sound.  Thanks so much.  We hope you enjoy.

Love, Brian, Heidi, Alida, and Lucie