Moving Forward After Multiple Surgeries

Friday

When we got back to the hospital on Friday, and we were headed into the weekend.  We were hoping the weekend would be quiet after the big hiccup from the day before. We wanted to be done with surgeries!  I couldn’t handle any more surprises from this little girl!  

Friday’s meant a new ICU consultant, so a new doctor that had to get familiar with your child.  Every morning would start with rounds around 8:30. Rounds would include the ICU doctor, the Nurse Practitioners or Physician Assistants, also known as the “mid-levels,” the Charge Nurse, a Respiratory Technician, a Dietician, a Pharmacist, Cardiology, several Cardiology Fellows and other specialties if you were working with them.  A lot of great minds working together for the best approach.

That morning at rounds, the doctors discussed that they just wanted a quiet day for Adeline.  She needed the rest after the multiple surgeries; her little body was just so tired after what had happened over the week.

The great thing about this Friday was that the ICU Consultant was not by as often to visit as they had been earlier in the week.  It is always a good thing when you are not seeing the ICU Consultant more than once or twice a day.  We knew Adeline was still very much on their radar, but they also knew they had to leave her alone.  

On Friday, one of the single ICU rooms opened, which meant we got to move.  We moved to the room Adeline would call home for the next five months.  No longer would we have to worry about sharing a room with someone, especially an adult.  It was great to move rooms, as the new room had a great view, and we were almost always first on the dock for rounds.  For a planner like myself, it was nice to have some sort of stability in this kind of situation.  

The best thing about this Friday was that Adeline’s sisters came down to visit for the whole weekend.  We were not expecting to be in Rochester for long, but we did not know what was ahead of us either after the hiccup.  It would be nice to have some familiarity with our lives.  The weekend after Adeline’s surgery was Easter.  For us, this would be our first Holiday with Adeline, and we were in the hospital.  We would make the best out of it.  The girls got down to the hospital just before supper, so we headed out for the night after a much-needed quiet day.

Saturday

Saturday’s plan was more of the same; let’s have a quiet day.  The big goal for the day was to start weaning off the meds so Adeline could wake up more.  If we wanted to get her off the ventilator, she was going to have to be more awake.  Throughout the day, they slowly started backing off on the meds, and Adeline seemed to be doing ok considering all she had been through. 

Rounds were over, and we were setting in for our day with Adeline.  The Pediatric Surgeon and his fellows stopped by to check on Adeline.  After doing a small assessment, they were pleased with how Adeline was doing.  Her incision looked tremendous, and Adeline looked comfortable.  

Saturday was also the first full day of the girls visiting.  When we went to the hospital, we would typically stay there all day with Adeline.  Being in a hospital room all day (obviously) made for such a long day for the girls. It is hard to entertain them and keep them reasonably quiet.  Because of this, it ended up making for a long day for everyone, so we ended up leaving the hospital early that day.  In all fairness, the girls did as well as a three and nine-year-old can do!  Thankfully, the Child Life group had activities that the girls could do.  

A nice, quiet weekend after multiple surgeries

Sunday – Easter

This Easter morning was a little different than the ones in the past.  I usually host my family’s Easter get together, but this year was different.  This year we were in a hotel room, but my parents were going to make the trip down to see us since they had nothing else going on. 

In the morning, when I got up to do my pumping, because yes, I was still doing that, I was sure to leave out some stuff, so the girls knew the Easter Bunny made visits to hotels too. 

Soon, after I started pumping(discreetly), the rest of the hotel room started to wake up.  Of course, the girls had to come and immediately ask if the Easter Bunny had been by to visit.  I pointed them in the direction of the kitchenette, and sure enough, it had! They were so excited!

Before we knew it, we had all gotten ready, ate, and were headed off to the hospital.  Luckily, the hotel is very close to the hospital, just across the street.  Once we got to the hospital, we had been told Adeline had a good night.  We both hoped that today would be the day that they would take out the breathing tube.  We asked the nurse about it shortly after getting to the hospital, she wasn’t sure today would be the day, but we would have to wait and see what the doctors said.

It was finally that time when the doctors came around for their morning rounds.  Sunday morning, the doctors didn’t have a lot to discuss.  Adeline still had a lot of fluid built up, and they were trying to figure out what the best medical “cocktail” would be to help her get rid of it.  They decided they would be aggressive with the diuretics to see what happened.  

The best thing about the day was my parents came down to see Adeline, the girls and us.  It was nice to see them as it gave us some normalcy to something that wasn’t normal.  After we all had a great visit and lunch in the hospital cafeteria, my parents headed out for the day.  

Besides having visitors, Adeline had a pretty quiet Easter.  We had needed some calm days to recoup from the eventful week.  We were now looking ahead at our next few days, hoping that the doctors would start talking about taking the breathing tube out again.  And, once the breathing tube came out, we could discuss going home.

~Jessi

The First Hiccup After Surgery

The first day after post-op was a long one.  Little did we know the curveball that Adeline was going to throw at us. It was the first hiccup after surgery, one of many. 

Adeline had a few “episodes” overnight where she was having some dips in her oxygen saturations.  At the time, Jeremy and I didn’t pay much attention to that number as we do now. I am not sure how low these dips were getting, but enough that they were starting to become more concerned. 

The other thing that continued through the night was that fluid was continuing to accumulate around Adeline’s belly.  They were still not sure what was causing it as they felt they had done everything they could think of to pinpoint it.  

This hiccup after surgery meant Adeline was still intubated (the breathing tube in).  At the time, since I was so unaware of things, I was just sad to see she still had the breathing tube.  As much as I wasn’t looking forward to Adeline screaming, which is encouraged after surgery, I wanted to hear her again! I did not realize at the time just how concerning things were starting to get. 

Morning

Adeline kept holding onto her fluids and she wouldn’t put out any urine.  Her tummy was starting to look like she was a balloon.  Cardiology had been by to see her, but they couldn’t see any concerns from their perspective.  I guess it was a good thing, but it sucked that they didn’t have any answers we desperately wanted.  

The doctors decided they would do one more x-ray and ultrasound to see if they could see anything. 

Nothing was showing up.

The doctors were running out of options since something was obviously not right.  

Their last option was to take Adeline down for an exploratory surgery.

The first hiccup after surgery…which was another surgery

Surgery #2

Since Adeline was collecting so much fluid in her tummy, the doctors knew they had to put a belly catheter in to help drain the fluid. The decision was made that they would bring her down to the operating room; if they found something more, they would be able to manage it in a controlled environment.  

As Adeline went down to the operating room, I was so scared for what lies ahead of her.  Hopefully, they would find nothing, they would just put the catheter in her tummy, and she would come back up – recovery could resume.

After Adeline went down to the operating room, we waited in Adeline’s room for word of what they found.  After a little while our ICU consultant came to give us an update on what was going on.  The surgeon had decided that he had needed to open Adeline because it was going to require more than a belly catheter.  After they opened Adeline’s tummy up, they had found that part of her intestines had died from something called NEC, Necrotizing Enterocolitis.  This is very common in newborns and preemies.  Adeline had it happen for a different reason, it was due to the perfusion in her body not being very good after surgery.  

I was devastated.

How did this happen?! 

I brought my baby in for surgery, she seemed healthy when we got here, what is going on?!

This can’t be happening.

The nurse told us surgery had went well and that the surgeons would probably be by to talk to us later.  She asked if we had any questions and left us be.

I was in shock.  

My little girl, not even a month old, already went through her second surgery.  This recovery process was just supposed to be 5-7 days.  Now, what was it going to look like? I just wanted to go home.

Adeline post-op with her new battle wound.

Post-Op-Surgery #2

Adeline got back up to the room, and it was crazy busy as the operating room doctors gave our nurse a rundown of everything.  Before too long, the pediatric surgeon was by to see us.  He explained what had happened, why they made the decisions they did, and so on.  Honestly, I do not remember a word he said; I just remember staring at him, overwhelmed. 

When he left, Jeremy and I sat back in our chairs and watched everyone work.  He held my hand as tears streamed from my eyes.  I just couldn’t get past the thought of what was happening. 

Soon, things started to calm down.  The nurse told us if we wanted, we could come by Adeline and see her new stoma if we wanted to.  I could hardly move, but Jeremy took the opportunity to go look.  

The ICU Consultant, the midlevel’s, and the nurses would check on us and apologize for what had happened. 

I am going to get a little science like on you now, so bear with me.  Part of the thing that made this so difficult for the doctors to diagnose was Adeline wasn’t giving the typical red flags that something this serious was wrong. Usually, when perfusion is not good after surgery, someone will have a high lactate, and they do not like it over 2.  Adeline’s never got over 2. Having elevated lactate would have been a critical indicator that Adeline was potentially having something happen like NEC. But, instead, the only symptom she showed was a swollen belly.  

Because of Adeline’s new battle wound, she would now have an ileostomy. We weren’t really sure what this meant, we just knew it was there.

That night, when we left the hospital, I fell apart in the car.  I just felt so overwhelmed by what had happened.  First, Adeline had heart surgery and then a significant complication shortly after.  Who knew what this would do for the recovery process as well as for her future?  

I just couldn’t process it all, I needed some sleep to reset myself.

Little did we know, this is how Adeline rolls.  She never fits the mold, nor does she do what she is supposed to.  The next few days become even more difficult; this was just the first major hiccup after surgery, of many. 

~Jessi

If you would like to go back and read about Adeline’s first surgery, start here.

Post-Op of the PA Banding Surgery

Time went by so slowly during Adeline’s PA Banding surgery.  It is like watching paint dry, except you must add anxiety into the mix.  I had brought things to do while we waited, but I really couldn’t concentrate.

We sat in a large waiting room full of people.  But, these other people, families, their loved ones were more than likely much older than Adeline.  I wondered if they were feeling the same way I was, nervous about the surgery outcome.

Once, a person made a comment to me that completely made sense.  It is always hard when little kids have severe heart defects, or really any kind of defect.  These kids do not set themselves up for their health problems like many (but not all) adults do.  But these kids just buck up and do it, and the way they recover, it is just amazing.  They are my heroes!

Did these other families sit here now, wondering what they would do differently from now on? 

Anyways, I watched my phone so closely that day.  We would get periodic updates about how the PA Banding surgery was going.  We didn’t have any additional family with us that day, so we would update the family periodically, letting them know we still hadn’t heard anything yet.  

Finally, a little after lunch time, the nurse came and got us to go meet with the surgeon.  The main part of the PA Banding surgery was done! 

We went and met with the surgeon where he told us that surgery had went well.  He said we were going to have to keep a close eye on the band, as it was a little loose.  He felt this was an ideal situation as it would give her time to grow into the PA Band.  Having that time to grow into the PA Band would allow us to do her next surgery, the Glenn, when it was right, not when we “had” to. 

The surgeon had some pictures of Adeline’s actual heart with the PA band for us.  He pulled them out of the envelope and showed Jeremy, because I just wasn’t ready to look at that.  There was a reason why I wasn’t in healthcare, after all!

We shook the surgeon’s hand and he led us and the nurse out of the room.  He warned us it would still be a few hours before we would be able to see Adeline but assured us again of how happy he was with surgery.  

We went back up to that waiting room to wait some more.  At least we knew that the surgeon said it went well.  Hopefully, that also meant recovery would go well, and we could resume our lives sooner rather than later.

Adeline in Post-Op of the PA Banding Surgery

First Seeing Her

This is the another thing no parent is every prepared for-seeing your child with a breathing tube down their throat.  This is especially true when your child is just a baby, so small you have hardly had any time to bond with them yet.

Not only was Adeline breathing with the assistance of a breathing tube, but she had so many machines hooked up to her.  Here I thought she had a lot of machines hooked up to her in the NICU.  I was wrong! 

The room Adeline “landed” in was a shared room.  On the other side of the curtain there was an adult patient, whose wife complained about how there was now going to be a baby sharing the room with them.  At least the room was large and provided plenty of room for all of us.

On our side of the curtain, the room was very busy.  We had the nurse who was finishing up getting everything situated from surgery.  There were lab techs, ICU Consultants, Physician Assistants/Nurse Practitioners(mid-levels), additional nurses helping as well as PCA’s.  They all worked like well-oiled machines.

One of the nurses grabbed us chairs so we could sit in the room with Adeline.  They told us we could come up to the bed and see Adeline, but I wasn’t ready.  I knew I would start crying, so I coped by keeping my distance.  Just observing the hustle and bustled and attempted to read my book was probably the best bet for me.  I mean, I would wake up from this dream eventually, right? 

After things started getting situated, the mid-level ordered an ECHO to make sure everything was going alright. The technician quickly came in and did Adeline’s ECHO.  After she finished her part up, she called the Cardiologist to take a look at the images.  

When the Cardiologist came by, he looked closely at the images.  When he finished up doing his informal analysis, he said he was very happy with the way things were looking.  He also talked to us about what the surgeon had told us.  The PA Band was probably a little loose, but that was the more ideal situation to give us time.  Before he left, he told us that if everything continued to look alright, that Adeline’s breathing tube could be removed(extubated) that evening. 

We were very happy with that news!  On track to a quick recovery!

Adeline’s Room had a lot of equipment!

Within a few hours, something wasn’t right.  Adeline’s tummy was expanding, and they didn’t know why.  They were running labs, and nothing appeared obvious. By this time, the evening ICU Consultant was coming on.  The two discussed how maybe they would attempt an ultrasound to see if they could see anything.  They also decided they had better do an x-ray.  

During all of this, we just watched on, but not overly worried.  I mean, the doctors were the experts, it was going to be ok. If we needed to be concerned, they would tell us, right?  Earlier in the day, the nurse had encouraged us to get some rest that evening, so we left and headed to my aunt and uncles for the evening.  

WE WERE SO OBLIVIOUS!!  But this was probably a good thing at this stage of the game.

The next day, things got a little more, well, interesting. 

~Jessi

The Morning of Adeline’s Pulmonary Artery Banding Surgery

Nothing can ever prepare you for your child’s first surgery, especially major heart surgery. My daughter’s Pulmonary Artery Banding surgery was no exception.

You can think you are prepared, but you aren’t.

There will be tears, fear, and major anxiety. 

I guarantee, what you are feeling is completely normal.

Before Surgery

The day before Adeline’s Pulmonary Artery Banding surgery, we had many appointments in Rochester.  I talked about these appointments here, but they included lab work, x-rays, pre-op exam, and meeting with the surgeon, Dr. Dearani.  

After our appointments that day, we headed to a local hotel where we were going to stay for the night.  We knew we would have to be to the hospital early, and we didn’t want to get up at a crazy time to drive to Rochester. Staying the night in a hotel would also allow us to have a calm evening together before that dreadful day.

We got to the hotel, set up the room for the night and we tried to sit back and enjoy the night.  

That night, I didn’t sleep at all.  I can still remember waking up every hour, dreading what was coming.  I had the whole night timed out as to when Adeline could eat.  As 2:00 AM got closer, which was the cutoff of when Adeline couldn’t have any more breastmilk, I was just stressing.  I got her up around 1:30 to see if she would take any milk.  Luckily, Adeline was willing to take some milk, which gave me some peace.  Peace of mind that maybe she would make it until 6 AM when we had to be to the hospital for admission. 

After Adeline drank a little bit of the milk, she went back to sleep, as did I.  Well, as well as I could sleep.  

The morning of Adeline’s Pulmonary Artery Banding surgery, I was a complete mess.

Day of Pulmonary Artery Banding Surgery

The 4:30 alarm went off before I knew it, and I was ready to get up! I wanted to get the day started, so I could face the fear of her having surgery.  

After Jeremy and I finished getting ready, we started to pack everything up.  We wanted to leave Adeline to sleep, if possible, to ease the risk of her waking up and potentially be hungry.  We got to the time where we had to get Adeline up and get going, or we wouldn’t make it to the hospital on time.  

Being as small as she was, we just did a few things to get her ready.  The night before and the morning of surgery, Adeline had to take a shower with a special soap to help kill any bacteria on her skin.  Adeline WAS NOT thrilled about this shower, but we had to do it.  After cleaning her up, we quickly dressed her and put her in her car seat.  She fell right back asleep like nothing ever happened…thank goodness!

We finished backing everything up in the hotel room, Jeremy packed it all in the vehicle, and we were on our way to the hospital.  The time was almost here; I was ready to throw up.

We parked the vehicle, grabbed Adeline, our backpacks with things to do during the surgery, and headed into the hospital.  When we got in, the line for Admissions was long, but moving quickly!  I, again, was so nervous that Adeline would wake up, screaming because she was hungry. 

As the line started to move, we finally had our turn to check Adeline in.  It was a quick and painless process.  After Adeline was checked in, we headed to the first floor of the hospital to the pre-op area.  From there, they called us back to start the process.  I was so scared (for her)!!  I couldn’t hold back the tears!  The nurse found me a box of tissues, and we continued the pre-op process. 

After the nurse finished collecting all the information, she gave us a gown to dress Adeline in.  She also told us that one of us could go back with Adeline as they put her to sleep.  So, we undressed Adeline out of her pajamas and put her in her hospital gown.  I just could not stop crying!! I wasn’t bawling, but I had to look like a mess, and I was.  

Then, we sat and waited.  We each took turns holding Adeline, trying to enjoy our time with her.  Eventually, the anesthesiologist came by to see us.  She quickly explained the process of getting Adeline ready for surgery and then left.  After she left, we waited again.  And waited and waited some more.

Finally, around 7:30 AM, they were ready to take Adeline back.  Jeremy had wanted to go back with Adeline, but there must have been some miscommunication so he wasn’t able to.  We both watched them roll Adeline back to the operating room, tears in my eyes.

My heart broke.

So many things were running through my head, questions that will never leave you, about what I could have or should have done differently. Adeline’s heart condition somehow had to be my fault, even though I knew deep down, it wasn’t.

This self-questioning will never leave me, even though I know I didn’t cause it.

Little did I know, that morning was the last time would be I would hold Adeline until June.

~Jessi

Our Time at Home with Adeline

Our time at home with Adeline was wonderful but very stressful.  It wasn’t stressful due to Adeline’s health, but rather the fear of the unknown!  Every parent is nervous when they first bring home a newborn, probably more so with a firstborn.  But, when you have a medically complex child, the fear is the same as that for first-time parents. 

When we got home with Adeline that Sunday, we were excited to beat the girl’s home from Sunday School! Even though they saw our vehicle in the driveway, they were happy to see us.  We enjoyed lunch with them, and we all admired Adeline.  After we enjoyed lunch, it was time to start putting things away, have Adeline nap, spend time with the girls, and of course, pump!  

During our time home with Adeline, my sister was able to catch a little smile!

Home

Our 16 days at home with Adeline flew by!  We were trying to be extra cautious with Adeline.  We were watching for all of these additional signs plus all the routine adjustments of a new baby.  Every time Adeline moved, I would watch her and see if she was turning bluer, having more labored breathing, or if she was having discomfort.  It is easy to convince yourself that more is going on than what really is.  

Our time at home with Adeline looked like what one would expect.  

I was tired all the time.  When Adeline would get up at night, we would have to feed her, and I would have to pump.  Since I had to track what Adeline was eating, it was important to me that I would be able to record the volume.  Yes, you could log her eating by the amount of time she was breastfeeding.  I am very much a Type-A personality, and I need facts to be able to see on paper what she was eating.  For the first few days, we would both get up and feed her.  Then, I would send Jeremy to bed, and I would stay up and pump.  

That got old…FAST.

After about a week of that rotation, I decided we need to do something different.  I couldn’t handle getting up for at least an hour, in the middle of the night, times two.  I decided that when we got up, he could feed, and I would pump.  Then, after a few days that got old.  I needed something more straightforward, something I could do more long term.  So, I decided I was only going to get up once in the night and pump.  For Adeline’s first feeding in the night, I would get up and feed her and pump.  Then, I would leave the second feeding to Jeremy and get some rest.  Taking care of me was just as important!

Then, we had some of our additional cares for Adeline.  We had to track and submit  the volumes of milk she was eating.  Then, we also had to track her weight, oxygen saturation and her heart rate once-a-day, around the same time.  I will always remember the anxiety that circulated around these once-a-day tasks. Her oxygen saturations were staying consistent, which we liked.  If she started falling too quickly, they were going to want to intervein.  Luckily, they stayed between 89 to 92, which was a satisfactory range, for now.  

Adeline taking a snooze during our time at home.

The weight was the big stickler here.  Congenital Heart Defect babies typically have a hard time with gaining and keeping on weight.  If Adeline lost more than .03 kg in a three day stretch, we would also have to bring her in to the doctor sooner.  This is the area where we were always borderline.  Adeline would finally be putting on weight and then she would lose all of it.  We were constantly on the rollercoaster of gaining and dropping.  

The weight gaining saga got even worse when they put her on the diuretic, Lasix.  Luckily, they did not put her on Lasix until a week before her heart surgery.  I remember having a conversation with the nurse coordinator about if Adeline continued to drop in weight, they were going to have to do something.  I didn’t know what something was, but I was sure it would involve a hospital stay, which I wasn’t ready for again! 

We always knew she was going in for surgery, but obviously we didn’t want to speed the hospital stay up any faster than necessary.  Every day, when we took her weight, we would pray that it was at least the same weight.  Adeline was the same weight on surgery day as she had been on the day, we left the hospital.  So much for her getting bigger!  

Baptism

It was very important to us that we got Adeline baptized before her surgery.  We felt as though she would be ok, but you never know.  Since we didn’t have much time at home before the surgery, we didn’t have a lot of choice regarding when we would have the baptism.  To make it more difficult, one of the two Sunday’s we had to choose from was Palm Sunday, which also happens to be paired with Confirmation in our church. This pretty much only gave us one Sunday and we had less than a week to prepare.  Looking back now, I am so thankful we decided to have her baptism earlier rather than later!  

The only good family photo from Adelines Baptism!

Doctor Appointments

Our time home with Adeline also included doctor appointments.  There is always doctor’s appointment with your primary doctor within a week or two after you leave the hospital with a newborn.  We had to have this scheduled before we even left the NICU. 

 A few days after we had left the hospital, we had our first appointment with Adeline’s primary doctor.  Nothing too excited happened at the appointment, thank goodness.  They did the typical things such as her weight, oxygen saturations, length and talk about any concerns we had.  At the time, we didn’t have any, we were just trying to enjoy our time home with Adeline.  

Then, there were the appointments in Rochester, which also had to be made before we left the NICU.  We had appointments two times in Rochester before Adeline’s surgery.  The first time Adeline had an appointment in Rochester, I brought her myself.  It was a pretty easy, she had a x-ray and an appointment with the cardiologist, which include a quick ECHO.  During the cardiology appointment, they found that Adeline’s heart was looking a little enlarged and that is when they decided to start the Lasix.  The compared her heart to a balloon, it could handle the stretch, but only for so long.

The next time we had appointments in Rochester, which was a week later, it was all our pre-op appointments. This required Adeline getting labs, x-rays, a pre-op, and meeting with the surgeon.  As a parent, it was hard to watch Adeline get a stick for the lab work.  I remember one of the lab techs telling me it probably hurt me more than it hurt her…I am not sure.  Adeline also hated the x-ray, and just so you know, she still does.  Luckily, it is a painless process, she just hates the fact that she must sit still.  

Adeline before she earned her “zipper” from surgery.

The pre-op appointment and meeting with the surgeon were the most painless appointments.  At the pre-op appointment they took Adeline’s weight and we talked all things surgery.  What to expect regarding how long it would take, what to expect while Adeline was in surgery, and the eating protocol before surgery.  This was nerve-wracking for me as well.  How do you tell such a small child, yeah, um, you can’t eat after this time or else you can’t have surgery in the morning?  Luckily, this was not a problem, nor has it ever been. 

After we finished all the pre-op stuff, it was time to meet with the surgeon.  The man is in high demand, and we waited for some time.  Knowing what we do now, it was well worth the wait!  Dr. Dearani told us about the PA Band surgery and what to expect.  In a professional and kind way he explained how difficult of a surgery this would be.  It is difficult to get the band the correct tightness, it is better to be too loose than too tight.  Being too loose meant there could be another surgery to make it tighter.  It was somewhat, but not really, a guessing game of how tight the band would be.  But he also had a lot of experience, so it wasn’t his first rodeo.   

As I have said before, this was all so new to us and it was so much to take in.  You just grab what you can from the conversation and go with it.  I remember at one-point Dr. Dearani talking about how familiar we would become with all the medical terms and it would all become second nature.  I remember telling Jeremy he was nuts, but he was right!

Reflecting

Looking back at our time at home with Adeline, it just brings me back.  We were just going in for a quick surgery and would be home before we knew it! Life would continue, I would go back to work, and we would probably have the next operation in about six months. 

 Little did I know how different things would be.

~Jessi