December 28 2024

We are still waiting on transplant

Wednesday July 28, 2021

We sold and packed our house in TN (May), arrived safely to TX (June), moved into an Airbnb for a month (June), rented an apartment (July), moved into an apartment (July), and have been working to get settled and get Arctura seen by the full medical team (present).

Arctura has been doing okay, but not as well as we would hope. However, that is exactly why we are here. The doctors are all brain storming options to keep her as well as possible. We will know more in the coming weeks.

Also, I am pregnant and we are excitedly waiting for Baby Nowak to join us very soon. We think Arctura is very excited too.

If you feel so compelled I made registries, one for Arctura and one for the New Nowak. As we are quickly trying to get ready, I will be adding things in the coming days/weeks.

Wednesday May 25, 2021

I’ll cut to the chase: Arctura needs a new heart. She has been approved to be listed for a heart transplant at Texas Children’s Hospital. We have our fingers crossed that she will make it until a heart for her becomes available, but it could be up to 2 years, and for the whole time she is listed, we have to be in Texas, so we are moving, right now.

This is her shot. It’s a good thing. But there is not a plan B from here.

More detailed: It’s been quite a few weeks. We have been processing and are in go mode.

In March, Arctura clearly was declining, so we changed a routine cath procedure from May to April, and took the trip to TX quickly. The “routine heart cath” that was meant to just gather data to see what was going on, was anything but routine. They determined in the cath lab that she needed a stent because one of her arteries was folded over. Surprise. They placed the stent and wheeled her out to recovery.

As she started to wake up, her incision sites started to bleed. She wasn’t clotting properly. At the same time, she had a huge clot in her leg. These two pieces needed conflicting treatment. She was sent to the ICU instead of going home.

The clot got worse (11cm) as they got control of the bleeding.

We established a home routine of blood thinners (which requires a shot in case you noticed bruises on her legs in photos.)

However in the time we were inpatient, the results of the cath came back... both ventricles are failing. This is significantly worse then we expected.

She was presented to surgical conference. They do not feel that they can help her.

Heart Failure Team, Heart Transplant Team, and Palliative Care approached us for meetings. Our options were transplant (if she qualified) or end of life care.

We made the choice to stay inpatient and start the heart transplant work up to see if she qualified. It was an intense and invasive and exhausting process. We as her parents had hours of interviews over multiple days. She was seen by what feels like every department, had many scans and evaluations by every kind of therapist. It took a week.

In that week, she started to look better. The pain from the clot subsided. The results of the stent started to really show. Vomiting settled down. We didn’t expect the stent to make much of a difference, but combined with medicine tweaking, and changing her food... it has made a huge difference... she is much more comfortable, she is growing, she is playing, she is getting much stronger, but her heart is still failing.

We made it home to TN on May 7th. In the TSA line, while all of our bags filled with her meds, her needles, and her food were being inspected, we got THE call. She was approved to be listed for transplant.

To be active status, she has to be within 1hr radius of the hospital. For the past 2.5 weeks we have been packing. We have been making arrangements. Working on selling our house and furniture. Finding a place to live in TX.

It’s been a whirlwind, we have been riding in the eye of the storm. We have called in the troops. Family has come to help us big time. Friends have been helping big time. We have less then 2 weeks left until we are TX bound.

Wednesday February 10, 2021

We have been on quite a ride. We were doing so well, slow and steady weight gain, no heart funny business, quarantined and riding it out until February when our teams could all be vaccinated. Unfortunately, in going to an office for an appointment we couldn’t avoid, she caught a GI bug. We had to move to only pedilyte diet, continuous feeds (about 18hrs a day non-stop). We were in constant communication with our teams, knowing how many ICU beds were available, should we need. It set us back a solid 2 to 3 weeks; she lost so much weight. But somehow, we got through her first “sickness” without a hospitalization. This is HUGE for her.
We have since gotten back up to her pre-illness weight and passed it! So much so that we are now double our birth weight! What a milestone!

Saturday December 19, 2020

We have been finding a new, new normal. After Thanksgiving the Covid rates around us increased. We knew that was coming, but then they started to become some of highest increasing in the country. Our team of doctors canceled appointments to limit our exposure; we are talking cardiology, pediatrician, everything, as much as possible. So we went from lots of appointments to essentially none.

I am a nervous wreck. This will be the longest we have gone without labs or and echo. We had just finished 2 month vaccines (she can only get 1 at a time), and so that progress has come to a stop. We stopped weaning drugs and just now holding the course. Except GI.

Arctura is actually doing so much better with GI. Eliminating corn seemed to be 90% of it. She still vomits daily, but not as much. This is very common with heart failure, so it’s to be expected. This is a night and day difference and she clearly feels so much better. She is sitting, and rolling and laughing, and playing, although not really talking much yet.

The GI doc gave us the full go ahead to give her any solids (except corn and dairy). So breakfast this morning was oatmeal and avocado and she had a blast. Apples are a serious favorite. And she loves a perfect orange.

We still need the tube, but she is growing. We have moved to the 4 percentile, even though the goal was just to coast on the curve!

Thursday September 23, 2020

Well, the cardiology appointment today could have gone worse, but it also could have gone better. Arctura’s heart function is lackluster but stable, as it has been for a while. However, her pulmonary artery is not growing. This is making her heart work harder then it needs to.
Looks like you are going in for another surgical procedure before we can leave TX. We are hoping they can schedule it for next week, but we don’t know. Unfortunately, this means we will be inpatient again. Just soaking up the time together until that happens.

Today we also went to the ZOO! With some of your special CICU nurses. They were so excited to show you everything. Arctura really liked the monkeys. Sticking with the theme of like “M” sounds. 

Wednesday September 22, 2020

Today we went to show Boots the resurrection ferns that grown around here, but are only green after rain. Since the tropical storm just passed they are bright green and luscious. Unfortunately, we took the long walk to them and you fell asleep Boots. That’s okay. You saw a lot and had a great nap. 

Sleep well, tomorrow is the big day. Cardiology follow up.

Monday September 21, 2020

Today we went to the pediatrician. Which means Mom had her first solo car trip with Boot! Of course it’s in the middle of a tropical storm.

Unfortunately, Girlfriend hasn’t gained any weight since discharge. We had just gotten on the growth chart when we left (2% 🎉) but fell back off. It’s a very delicate balance for her to have enough calories, but not too much fluid because that can overload her heart, but also still be digestible for her belly. This will be another ongoing battle for her. But for now, we just optimize her a little bit at a time and fingers crossed for weight gain before our next appointment (Thursday).

Sunday September 20, 2020

Today we did our first real car test. From the hospital to the apt is about 5 minutes, so honestly, that didn’t count.

We met us with one of Josh’s classmates (that of course is being Covid safe) for dinner and to make cream cheese. We successful ran the feed pump in the car. She slept the whole way there and back. 🙌🏼

Wednesday September 16, 2020

After 168 days inpatient, Arctura finally left the hospital to spend the night with us. The past week has been crazy post opp and we were not expecting this!

Home is where the heart is, so right now Texas is home. 

We have several follow up appointments in the next 10 days that will determine if we can head right to TN or if we need to stick around a bit longer. 

Regardless. This is so much good.

Thursday September 10 2020

Today Arctura went back to the OR. This is trip 6. This trip was to have a Gtube placed.

As much as we work on feeding with her, she just hasn’t been able to be consistent enough; she struggles to take enough by bottle every day to grow. Plus she gets meds many times through the day, every day. The gtube gives us access to put meds and food right into her belly as she keeps growing and getting stronger. Going home with the NG tube (the tube that was on her face wasn’t a safe option for her with her heart anatomy as it put her at risk for cardiac arrest (this is RARE, but her anatomy increases the chances) each time we drop the NG tube.

Right now we are trying to get her to rest, manage pain (without anything strong based on her history), and keep her off her belly (struggle).

Tuesday August 25th 2020

We have exhaled, cautiously.

Today just kept getting better. We adjusted the fortification of her formula again; but now we are parked here and will not fortify more. She seems to be tolerating it so far!

She loves her toys, loves FaceTime with family, loves her caterpillar book sent by Auntie Beth. She smiles at words that start with M (maybe mama will be a first word!).

Today was day 8 on the medication to take care of the infection. It’s working, but its still clearly present. She SHOULD stay on this med for a full 21 days. Because of the VERY risky potential heart complications, we must stay inpatient. They might consider stopping early, but we are extremely hesitant because of the risk of reinfection.

Monday August 24th 2020

GUYS!!! She passed her Car Seat Test!

This is so big. We are really starting to check the boxes. And this one was nerve wrenching. Several weeks ago, when we starting to try to get used to the car seat, she would Brady within minutes of being in the carseat. This means her normal, awake, resting heart rate of 120s would go to 50s and 60s. This is super dangerous. She was already doing this pretty much every time she vomited, but sometimes, for no reason. Electrophysiology said it was a 2:1 heart block most likely caused by a heart drug that we had gone on to get off the other heart drug. We stopped that drug, with fingers hard crossed that she didn’t go into heart failure. It took several weeks without the med, but the 2:1 heart block stabilized and we are now car set ready!

If she had failed we would have had to look into “Car Beds” which are not as safe, and with a 16+hr drive in our future, safety is critical. We are so relieved that she did well!

Saturday August 16th 2020

Arctura is super uncomfortable and she is over it.

She doesn’t want to sit up, she keeps pulling the washcloth over her face, she is throwing up about half (or more) of every feed, refused to bottle feed at all, stopped gaining weight, and is teething. We are feeling pressure to get the PICC line out and get a g-tube done, but Mom feels like all of the symptoms can be attributed to a terrible case of thrush (should have been diagnosed LONG ago), and I feel that it has spread to her whole GI system (GI department and Infectious Disease also agrees that I could be correct) and it would explain all of her symptoms that have increased over the last 3 weeks (We had an echo and confirmed it wasn’t her heart).

Unfortunately, the only solution that has been presented is a topical acting med, not the systemic one, because the systemic one interacts with her most important heart med. Going on it would spread her heart beats out to much and likely put her into a 2:1 heart block (skipping every other beat). Continuing with the topical oral med will take WEEKS.

Part of that differential diagnosis of all her individual symptoms, we are also trying a new formula the has no rice, incase she has developed an allergy… but mom is far from convinced that will do anything.

For now, she loves playing the best she can while staying as low key as possible. She loves chewing her giraffe teether (especially when its cold), and the wet/cold wash cloth is a great chew toy/block out the world toy.

On a positive note, we finally got our Newborn Hearing Exam… guess what… we passed.

Thursday August 13th 2020

Today Boots got to see Sharks! How cool. Part of Child Life is to enhance the experience while in the hospital and so they brought around a tank of tiny sharks, and my oh my was Boots fascinated and totally enthralled. Luckily they came after her but before her feed, so she was clean and cute and able to sit up for a bit and actually enjoy!

Sunday July 26th 2020

We are just going to celebrate that Arctura is getting better with smiles and it is melting our hearts.

Saturday July 25th 2020

Welp, we are stopping the BP med immediately. Mid-day her BP started to get dangerously low. We had hoped she had come off enough of the last sedative to start this, but it turns out… not so much. It also might not be the right med for her, but regardless the whole team agreed we can not try anything again until this sedation wean is done.

Fluids were ready to be hung if she had gotten any lower, but we were able to keep her okay just with play and keeping her awake.

This week has been a roller coaster.

The silver lining today is that we are totally HERE FOR THE LEG WARMERS. (They were totally Ambers idea/suggestion).

Friday July 24th 2020

First off and most important- today Josh and Boots were TWINSIES. And, did you know that baby leg warmers are a thing! And that they are WAY more functional then pants? Just saying.

That said, Boots had a kidney exam today, and it came back that we have one fantastic kidney and one eh kidney. BUT we have enough function to safely start a BP medicine that might give her a little bit of reserve.

Back before I did these updates, Boots had an episode in which there was concern about her kidney function. We could see one wasn’t as well off as the other, but didn’t know actual function, just compression of the two. It turns out the episode was a thrombus and there is scarring. That means at the time, we did everything we could (there was a clot in her arm so she was already heavily medicated for clots), and can’t do anything now. We hope that the kidney grows and can be effective enough. If not, she will have to have it removed at some point.

But in terms of the BP drug, we are good to go!

Thursday July 23rd 2020

Today, will go down in history. After 114 days, Boots smiled for us for the first time.

As far as communication in the CPCU and feeling heard/safe… today was worse. I am talking to a lot of directors and managers. We want to go back to the ICU. And I will just leave it at that.

But Boot’s smiled. And that makes today amazing.

Excuse the way over enthusiastic baby voice.

Wednesday July 22nd 2020

Boots had a fantastic night sleep (cue incredible bedhead) and was even interested in play, you know lifting her head all on her own basically for the first time (YAY).

We finally got the labs and the echo that I wanted last night… but since it was over 12hrs later it doesn’t show a full picture to decipher between cardiovascular strain or dehydration.

Unfortunately, we still are not having the best “communication and response”. Certain staff on the CPCU decided, apart from our primary team, that she would need to be re-presented at surgical conference, and then they proceeded to have zero answers to my basic questions. This does not give me much confidence or reassurance.

After a medium size panic attack, and then a break down, I got myself back together and text with Boot’s primary cardiologist (who is AH-MAZING). She looked at the echo and explained it was relatively unchanged from the week prior and that we were not re-presenting her at surgical conference. Yes, eventually Boots will need a second surgery, but the plan is to wait as long as possible. So the freak-out, was unnecessary and completely avoidable.

However, we did learn she has ZERO reserves. If something is out of balance, we are in trouble. Over the next several weeks/months, we need to work on this. It might involve starting some new medications, but might just be growth and weight. But this is the definition of FRAGILE.

Now, I know there is a transition period to get used to the CPCU compared to the CICU, but the things that are happening are just blatant mistakes… and honestly, I’m not the most upset about the mistakes, but rather that when I bring them up, I am shrugged off.

Although today is Mom’s (Maddie’s) birthday, we have decided to reschedule it, so don’t say a word about it. Today overall was sucky. That said, Boot’s and I did match, which was fantastic. But on my actual celebrated birthday, we are just going to have to, somehow, top the giraffes (both my shirt and her onesie were fabulous gifts a bit back from a client, Sandy).

I am at whits end & exhausted. I want to go back to the ICU.

Tuesday July 21st 2020

Well, that did not go well.

Over night she was a trooper, although not thrilled to be awake every 3 hours to eat. However during the day she just could not stay awake and could not take the full volume of her feeds. By dinner time (about 24hrs) her heart rate rose to be tachycardia and she quickly started to decline.

We dropped the NG tube and got a full feed in her, and then too much of moms dismay, waited.

Unfortunately through all of this, there wasn’t the best, let’s say communication and response, from the staff on hand. Mom had to advocate (actually yell) really hard to have the nurse get the doctor, but the nurse didn’t get the doctor. Instead she got a resident. This resulted in not getting fluids, and echo, or labs. Therefore, we don’t exactly know if she was just dehydrated or in heart failure due to cardiovascular strain (eating can be very exhaustive for a baby). I didn't fight too hard at the time because I was exhausted after a full 36hrs with maybe 2hrs of sleep, but in hindsight, this should not have gone this way.

Some of this is transition to the CPCU (less monitors, interruptions , urgency, and noise), and some of this just shouldn’t have happened this way.

That all said- Boot’s heart rate is back to stable and she is okay for now. But this was not the intro to the CPCU we needed.

Monday July 20th 2020: Part 2

YOU GUYS. HER FACE. It has NO TUBES/WIRES/STICKERS/TAPE.

Upon leaving the ICU, they removed her NIRS (the sticker that was on her forehead her whole life, and then shortly after getting to the CPCU, girlfriend sneezed out her NG tube. In the ICU, they would have pretty quickly dropped another one in, but here, this means we are doing a PO (by mouth) trial. She regularly takes more than half her feeds by bottle, so we are going to see what she can do. The NG tube itself can make it harder to eat and make acid reflux worse, so by taking the barrier away, maybe she can do it! She also has to take all her meds by mouth though as well, and there are a lot. That said, the 2pm meds and the 3pm feed went great!

So today, we see her face, for the first time since her birthday.

I will stay the night in the hospital since she takes the most volume by bottle for Mom.

Monday July 20th 2020

After 111 days in the ICU, Boots officially graduated to the CPCU (Cardiac Progressive Care Unit). 

Here we will continue weaning, optimizing meds, dealing with less critical issues, eating, and growing, while monitoring here heart. But here, there is less stuff, less interruptions, less noise.

It was such a bitter sweet day. Unfortunately, her primary team of nurses, and her primary intensive do not follow us out of the ICU.

This is super exciting, like HUGE, but also understand, that we are only 5 floors away from the ICU for a reason. Also, we will likely be here for while. (Home and discharge are still taboo/banned words.)

Sunday July 19th 2020

“Mom…stop taking pictures… I am hungry!”

Saturday July 18th 2020

Time to wean the last one. This is the last of all the sedation. To put it in perspective, at one point we are maxed out on FIVE sedatives (some pretty hard stuff). These were necessary to keep calm and comfortable while she was intubated for so long, while her chest was open, etc.

This last one is the least “hard” of them all, and honestly, we are partly using it as a blood pressure regulator. There is a chance we stay on a smaller dose, or potentially, if necessary, start a different BP med. But point being, a wean that is better to do in the hospital.

While that wean is going, we keep doing our OT and PT work; getting strong and progressing with the things she couldn’t do for so long, like tummy time work! How cute!

Friday July 17th 2020

Arctura is recovering quite nicely from the Methadone withdrawal shenanigans and overall just had a fun day of eating, dress up, cuddles, and play. We got some new Bows!

Girlfriend is getting significantly more head control and starting to LOVE sitting up and seeing the world.

Thursday July 16th 2020

Well... we were supposed to leave the ICU today, but Arctura bought herself at least a few more days.

Overnight she raged... I mean R.A.G.E.D.: puking, tremoring, skin crawling, could not be touched, fever... was having NOTHING. The over night team had to give Boots some morphine to calm her down. 

This timing wise was lined up perfectly as a last horary for methadone withdrawl, but again, could also be signs of heart failure. Labs also showed some elevated heart markers... so we needed an echo.

Echo looks good, elevated heart markers is likely just because of her rage, and we are happy to say she has beat methadone. 

However, they want to watch her a couple days after that crazy night and don’t want to send her to the step down unit headed into the weekend, so we are still here. 

Wednesday July 15th 2020

Today Arctura went for a second swallow study. Because she was intubated for so long, there was damage to her vocal cords called a stridor, or vocal cord paralysis. This made her cry very weak for quiet awhile and it dangerous for her to eat in the wrong positions or the wrong bottle (risk that she couldn’t stop the milk from going down into her lungs- aspiration). However, as so much with her swallow appeared to change over the past few weeks, how much louder she has gotten, and as we wean her from sedation, we needed to take another look.

She passed with flying colors. She can now feed in whatever portion, with whatever bottle she likes, safely.

Now it is time to up your game girlfriend; build up some endurance to take a full bottle please.

Saturday July 11th 2020

Another stable night, means today, we move forward. This is the start of seeing how her heart handles stress without the heart drug.

Now, we continue the methadone wean. Honestly, she is barely on a sniff of it, but not an easy drug to get off.

We started the conversation around her PICC line. It no longer draws back and its 3 months old, therefore a higher infection risk. We have tried to troubleshoot it 6 times over the last 3ish weeks, to no avail. Either Monday or Tuesday they will have to place a new one.

This week we also changed her formula to something that might help with the acid reflux. It could take several weeks to really make a difference, but we are starting to see her spit ups get smaller/less frequent and more interest in the bottle again. Maybe its the formula, maybe its the tummy time: honestly, I don’t care which, as long as she drinks. If she can’t take full feeds soon, we have to move to a g-tube.

Friday July 10th 2020

ECHO IS THE SAME AS PRE HEART DRUG WEAN. FREAKING YES.

She is still “fragile” (the Docs word) and we need to see how she continues to progress.

But with that good news, I also want to introduce Sara.

Sara works with Child Life here at TCH. We met her the day before Boot’s big surgery, because if we are being honest, the odds were strongly against us (a level that most people can not realize the extent). We went through the motions of memory making: collecting hand and foot molds and print, taking photos, and just general cute things we could have as they took her away. Sara facilitated this with us, somehow smiling and finding ways to lighten the really heavy mood. Oh, and don’t forget she stayed 2hrs after her shift was over, because that is when the hospital would let Josh in to see Boot, and she never said anything about it.

Since Boot’s did survive surgery, and because she is so stinking cute, Sara comes by at least weekly, to take pictures of her growing (and prints them out so that Josh has pictures for his “desk”), brings her new toys regularly, and for the first time, this Friday got to hold Miss Boots.

Sara has made a huge difference to us. Her work is literally priceless.

Thank you Sara.

Thursday July 9th 2020

Mom had a sheer panic moment walking into Boot’s room today and seeing all the med pumps OFF (meaning the heart drug). Heart drug got turned off yesterday, and I just didn’t process that it was OFF, and thank goodness I had not, because I would have been a disaster yesterday.

But this means, we have been OFF for 24 hours!

She looks stable, but the real picture will be told during the echo tomorrow, at the 48 hour mark. Fingers are cross, hard cross.

Oh, she wears cloths now.

Tuesday July 7th 2020

So far so stable.

It doesn’t seem like that adjustment to the acid reflux meds are helping much, so we are exploring other things to help.

Also, Speech is working a whole lot to try to get her back to taking the bottle.

This update is mostly just because I really like the picture. I snuck it after bath time (wipe down time: she can’t have a bath because she has a PICC line), before they replaced her NIRS (the sticker which is usually on her head). Someday we will see your whole face.

Monday July 6th 2020

This afternoon we wean again, she is now at 25% of her original dose. Usually the doctors skip this level, and go straight to off, but with her history and how particular she is, it was necessary. We will sit here for a couple days and let her get used to it.

For now, we are trying to optimize her meds for acid reflux in the hopes she keeps down more of her feeds. We are trying to rescue her PICC line so it doesn’t have to get rewired.

Other than that… “Hey Dad, what are we going to do today?”

Sunday July 5th 2020

With the hydration back in balance (dry, but not too dry), we weaning the heart drug again. Now we wait.

While we wait, I want to introduce one of the nurses on our primary nurse team; meet Amber.

Amber has taken care of Boots A LOT, even before we got a primary team (which mind you, took 10 weeks to get, thank you NOT Covid). Amber has been with us through the thick of it; when Boots coded before surgery, her SVT runs, surgery, ECMO, the first heart drug wean fail, lots of sedation withdrawal, and now. She was the nurse who helped me hold Boots for the first time in TX. She has cared for Boot with love, and Boots loves her right back, usually with vomit.

Amber makes sure that Boots has all the loving she needs while I pump/eat and when Josh is in class… all things way above and beyond what is required of her.

Thank you Amber.

Saturday July 4th 2020

This little firecracker knows how to keep it exciting.

I walked in to find that she vomited at least half of every feed over night, including her NG tube at some point, very tachycardic, other sats dropping, and generally fussy to no end.

These are all the things we are watching for to see if the heart drug wean fails, so ensue panic.

Very quickly the team ran their differential diagnosis and came up with every reason for these symptoms possible, including heart failure, infection, dehydration, etc and went immediately to run every test; EKG, Echo, blood markers for infection, electrolytes.

It was determined that she was dehydrated. Keeping her dry for this wean is imperative but it turns out that we crossed over to be just a little too dry, and by late afternoon she was feeling better.

That said, it was such a relief to get the echo and show that her function was unaffected. We are 25% off the heart drug.

Now everyone reading this, go have some water.

Wednesday July 1st 2020

The Good: Today, you are 3 months old. You are adorable. Today you got your first mirror selfie.

You LOVE to be upright, sleeping or awake. You want someone with you or to play at all times. You love the mirror, your new mobile, your aquarium light up toy, your fireflies, and toys that make noise. You started to reach for things. You just made it through the 12 week leap and started to sleep a bit more again.

The not so good: On Sunday night, I got called in to the hospital at 10:30pm to make the decision to put you on IV fluids since you wouldn’t keep down any formula. In-fact, you threw up so hard that you threw up your NG tube… twice (in 12 hours). We are having trouble maintaining a proper fluid balance. You have made steps back and now are “refusing to feed”. She has lost a pound and we are back in newborn diapers. We are trying to prepare to wean the heart drug again, better optimized, but honestly, we have maybe a 50/50 chance that this will work.

In the mean time, we are just playing as much as possible, and enjoying your less sedated self.

Saturday June 26h 2020

It has been a week.

With time and a transfusion, Boots heart is doing better.

While the team has been brainstorming what to do next, we have been sedation weaning like crazy and she has come off the last of her benzo’s and got to basement dose of the Methadone. (There will still be another to go, but we will get there). But now, girlfriend is WIDE AWAKE, literally all the time. It’s clearly really hard to sleep when you don’t have sedation every 2hrs. So.Over.Tired. She wants cuddles and toys ALL THE TIME.

This week we also finally came off the 0.12L of low flow (barely a puff), so now we see this cuties face.

Even more exciting though, today her bottle feeding improved drastically. Once, she even took the whole feed by bottle. Fingers and toes are crossed that we can avoid a gtube.

Saturday June 20th 2020

Welp, echo confirmed heart failure. The heart drug wean failed and the pukeiness has been from the rest of her body shutting down. When the heart fails, it prioritizes where to send blood; one of the first places it takes from is the gut. She is back up to her full dose of heart med, and all the sedatives have been moved back to IV so that withdrawal doesn’t compound the issue.

We now have to get her back to baseline and work on a new plan. Failing this wean was a huge set back. Its not a drug she can take out of the ICU, there are not many others she can take in her place. Our team is brainstorming.

However, girlfriend really likes looking at this mirror. I think she knows how cute she is.

Thursday June 18th 2020

We are having a pukey run of it. It could be sedative withdrawal spiral from throwing up, it could be from coming off the heart med we are presently weaning, it could be something else.

Boots does much better being held, loves the smell of us, and likes the sound of the heartbeat.

The night nurse took some of Moms cloths to help Boots feel safe overnight.

Monday June 15th 2020

Boots had her Swallow Study today, to see if she was learning to safely bottle feed and make sure she wasn’t aspirating. She did a great job protecting her airway (not aspirating), but has not quite mastered the coordination of the swallow. Just needs more time to learn.

After the swallow study, we started a big wean. This time a heart drug; a heart drug that she can not go home on. This wean will take a while to get through. If she fails the wean, surgery is back on the table, if not… we will be able to go to the step down unit. So fingers crossed please.

Otherwise, today was a little pukey. It’s not technically a sedation wean days, so we arn’t 100% sure what is going on.

But she sure does love Dad cuddles.

Sunday June 14th 2020

Boots learned a new trick.

If she holds her breath or screams long enough, Mom will pick her up, and then Boots would literally hold on.

This made for a wonderful day of cuddles. When I needed to head home, she really wasn’t having it until we put the heartbeat sound on the noise machine… which makes sense because she just wanted her ear to Moms chest all day (smart nurse).

Friday June 12th 2020

For Boots it was a rather uneventful week… until today.

This weeks focus was to get her drugs to be “PO” (by mouth) to help limit access to her PICC which would reduce the risk of infection. We also took this time of little changes to gather lots of information, head ultrasound, echo, etc. Her echo looks unchanged, which isn’t idea, but is also better than it looking worse; same thing for her head ultrasound. We also keep progressing with learning to “suck, swallow, breath”. There were lots of appointments every day with RT, PT, OT, Speech (Respiratory Therapist, Physical Therapist, occupational Therapist, and Speech).

All of that was good… until we started the sedative wean again and entered the withdrawal woods again. We are back to the projectile vomiting and overall skin crawling discomfort. We have to get through this. Its going to take lots of chucks and a hell of a lot of laundry.

Picture is from this morning during PT, before the withdrawal hit. She got to sit up in the chair for the first time today and loved it.

Sunday June 7th 2020

Fingers are still crossed, but so far the wean is going well. If something were to go wrong, we would know by Monday/Tuesday, even through we are officially OFF.

Today we are working to get off High Flow nasal cannula to wall oxygen (also called low flow). She could actually go home on low flow if everything else keeps progressing.

We are also working really hard on our sleep cycle; awake and practicing our pacifier while the NG feed is running, and sleeping in between. Each day she is getting a little better!

Friday June 5th 2020

Well, we are here.

We are in the middle of a drug wean that she may or may not need. This is one of the scary weans that if she needs it or we go too fast, we will hit the fan. The emergency equipment is ready and in the room. We have not seen this equipment for several weeks so it is putting mom on edge a bit. But it is here to ward off the bad juju (and just in case). This wean is pretty much the only thing we are doing all weekend. Oh and cuddles and pacifier practice.

Wednesday june 3rd 2020

It has been a big day. For the first time since April 28th, the 3 of us were able to be together. It was amazing, but also a super rare occurrence, and potentially will not happen again until we are out of the hospital. Regardless, Boots loved it.

We all needed to be present for a family meeting to make some decisions, and review the steps necessary to LEAVE THE ICU to go to the step down floor. We still have a few steps to go, but the conversation has started.

She is tolerating breast milk so it looks like the whole snafu was because of a slow gut that needed to wake up after not eating for most of her life, mixed with some serious withdrawal. We are now up to full fortified feeds and working hard to gain some weight.

Monday June 1st 2020

Arctura is 2 months old day. We are completely in awe that you have come so far; that you are alive and you are progressing, abet slow. Thats fine, we see you. This can be your way.

This weekend we came off 1 of the sedatives. 3 left to go.

Today we are doing a breast milk trial (8 feeds over 24 hour) to determine if there is an allergy.

Saturday, May 30th 2020

We are going slow. It is looking like the vomiting has been a mixture of severe withdrawal (a battle we will be facing for months) and her gut just “waking up” since it has not ever had this capacity of food. Will will be testing breastmilk again early this week, so fingers crossed.

She also keeps asking us to go snail pace with all the advances and weens, so its been slow. We keep playing the “will this make her vomit” game with her feeds and timing her sedatives as precisely as possible to help keep everything down.

Eat and grow Boot. Eat and grow.

Tuesday, May 26th 2020

Arctura is doing better than she was on Sunday, which is a great step, but she is still struggling.

Echo showed no change in her heart function so that is good for now.

And the projectile vomiting has stopped with controlling sedation, however she is still gagging, coughing, spitting up, which could also indicate a problem with her gut/allergy, or could still just be withdrawl. It is still really up in the air and hard to watch.

That said, girlfriend was okay enough to be held for the first time in almost a week. Mom and Boots were able to do skin-to-skin for the first time, and Mom also got spit up on. Oh the normal things.

Monday, May 25th 2020

All her sedative meds have been switched back to IV since the withdrawal spiral just keeps getting worse since she throws everything up. It is in hopes to eliminate the withdrawal as the issue and allow the docs to get a better picture of what’s going on. And so she isn’t so uncomfortable.

It is slowly helping, but she is also sleeping more (not a bad thing), so eye ball time is elusive. Josh was able to time everything to give me (Mom) a couple minutes with her calm and not puking.

Still waiting results from the echo and a belly ultrasound. Hopefully we will have answers soon and that she keeps feeling a bit better each day.

Saturday, May 23rd 2020

We had a great day.

Boots was awake for over 6 hours, happy and content!

She FaceTimed with Dad, all the Grandparents, and Auntie Olivia. She played with her dragonfly toy hanging over her bed, pulling on her rings (after I put her hand on them). But most importantly, she has been on formula for 24hr with just one small puke tonight.

It is so good to see her feeling good.

Thursday, May 21 2020

Unfortunately, we are back on CPAP. Too much is going on. She isn’t tolerating feeds at all (throwing up during the feeds petty much everything she is taking in). She is withdrawing from sedatives. But also straining to breath and developing a pronounced “squeak”, even though she still doesn’t have much of a voice.

She needs a break. 2 steps forward, 2 steps back its feeling like right now. Hopefully soon we can figure out some answers but Arctura is at least a bit more comfortable and able to sleep a little on the CPAP.

Tuesday, May 19th 2020

Slow and steady on the ween of sedatives, slow and steady on the feeds, and doing well with the high flow weens.

Arctura is almost back to birth weight, which is a great win!

Monday, May 18th 2020

The rules have changed!!! Boots is officially allowed to have 2 caregivers (Mom and Dad), but we can not be there at the same time. Stinks a little, but we are SO GRATEFUL and SO EXCITED. Mom gets to take her first day not going into a hospital since March 30th (induction admission) and Dad gets to see his Baby Girl (He got to see her for 3hrs on April 28th, and before that was when we put her on the transport to TX on April 3rd).

LOOK AT THEM. MY HEART MELTS.

Friday, May 15th 2020

Today Arctura trooped through her first high flow nasal cannulation trial for about an hour. She did well! and will intermittently be on the high flow to give her face a rest from the CPAP, help strengthen her lungs, and to test out how she is doing.

We also have a better handle on sedation, however weening down and withdrawal is going to be a beast for her, likely taking many months. But right now we are steady and slowly trying to work towards being able to take meds orally without weening the amount much. This will eliminate some of her lines and way down the line, if she is ready, she can go home while we continue the sedation weening.

But in order to be able to take oral meds, she needs to take feeds, so that is our new focus. Its been a good while since she was fed, so honestly, this isn’t going super smoothly. Just taking tiny amounts at a time, one feed at a time, one day at a time.

Tuesday, May 12th 2020

She is extubated to CPAP!

This is a huge step, and extremely scary. She failed extubation the first week we were here in TX. That failure, mixed with the repeated collapsed lung the other weekend, makes this even higher risk. So far she is stable, but there is still quite a bit to ween off the CPAP to get to the “normal” oxygen. Parents are still holding our breath until we make that transition. If she fails the ween, she will have to be re-intubated.

However, without the tube through her nose/mouth, it is much safer to hold, and so once she was stable, we snuggled for hours.

Saturday, May 9th 2020

We spoke too soon.

Last night, Little Miss Boots went into another run of SVT (arrhythmia). They were able to get her out of it again, but decided to put her on an anti-arrhythmia medication. This is likely now a life long thing for her; we are just hoping it does not progress further.

Also, part of the surgery seems to not have gone as well as it originally looked. There are still lots of moving pieces, and she might be able to live with it, but perhaps not. We do not know, and can’t know just yet.

She is also showing some symptoms of withdrawal. Sedation has always been an issue (she has needed them since birth), and she has been on a lot of top gun meds to keep her calm and comfortable, but they need to be a bit lower to get her ready for extubation. Its hard to see our sweet Little Boots like this, but they are doing everything they can to keep her comfy while still getting her ready for extubation.

We are not out of the woods yet.

Wednesday, May 6th 2020

Boots had her chest closed today! She is officially a zipper sister (you can see the wires holding her sternum together on her X-Ray).

This is a huge step in the right direction, however this is still a very critical time for another 48hrs. We are told that if she can make it to Saturday, and stable, that we are then in much better shape.

She also started with a pacifier today. We have some learning to do but it is quite adorable while she starts to figure it out. When she is tired/done with it, she just opens her mouth up wide and holds her mouth open, waiting for me to take it away.

Monday, May 4th 2020:

Today marks 5 days post-op. Boots HAD been on ECMO for 4 days.

However, her lung did not collapse again overnight last night, and her surgeon felt that she was doing well enough to investigate if the heart repair had been damaged with the lung issues. Fingers crossed, but based on what he saw, his original repair was still intact, and she passed the ECMO ween.

She is now off ECMO. The next 48 hr are critical. As long as there is no funny business, we hope to have the surgeons close the chest on Wednesday. Fingers are crossed.

Until then, I are trying to convince her to sleep, but she has a mind of her own and wants to know what is out there in the wild world.

Oh, and she throws a FIT if you try to take her giraffe away.

Wednesday, April 1st 2020

Arctura May Nowak
Aka- Boots
Born 4/1/2020 at 12:02AM
7lbs 6oz

Arcturus is the brightest star in the northern Hemisphere. It means Guardian of the Bear in Ancient Greek. It is the star in the constellation Boötes, hence the nickname Boots.

28hrs of induction, with 5.5hrs of pushing, this sweet fighter just wanted to be an April baby no matter what..

Arctura was transferred Friday from TN to Texas Children’s.

This is the hard part Boots. You got to fight, grow, rest, be strong.

Still a lot of unknowns but we are in good hands.