Hospital Time

"Tough times never last, but tough people do" - Robert H. Schuller

After a recent trip back to Kosair Children's Hospital, the scene of the crime as I like to say, I was overcome with many memories.  Unwelcome memories that came rushing my way because of the sounds, smells and people I saw.  All senses bringing back images of heart doctors, morning rounds, eating my breakfast of a biscuit and 3 pieces of bacon, pumping behind a curtain in Brady's hospital room, walking to the connected hospital for food or to use the library laptop.  Memories that may seem like nothing if mentioned to most people, but to me lead to memories of Brady with tubes and wires coming from every direction, surgeries, IVs, blood draws and medicine pumps that looks like trees.  Memories of times in which you have your entire family around you, yet you feel so alone.  Looking at your child laying in a hospital bed on a ventilator, afraid to touch him for fear you will become too attached, putting every bit of your hope into each and every word that comes out of the doctor's and nurses mouths.  These memories are morbid and literally haunt me when faced with even the smallest reminder.  However, to get through the agony of these memories, I tell myself that without this amazing facility and the people in it, Brady wouldn't be alive today.  The miracle workers that gave Brady a chance at life, all so kind and patient.  Each taking the time to answer every question, whether small or big, in an effort to ease the pain even in the slightest.  I have to remember this otherwise when those memories come wafting back, I would collapse.  For they were the toughest times of my life.  And at times when looking back on the experience I feel like I was having an out of body experience, having no idea how I made it through.  Unbelievable tests of strength, mostly on Brady's part.  But there are also memories of finally getting to hold him and dress him and see him smile.  It was the toughest journey, but also a massive turning point putting life into such a different perspective, a greater view.  It made me a better person.  And as I think about the thriving and amazing, beautiful, completely determined baby boy determined just like when he was in the hospital, I am able to get past my memories that haunt me, because he has.

1 Day Old

At only 4 lbs., Brady endured a 2 1/2 hour surgery to repair the 3 atresia sites on his duodenum.  The wait took place in a large waiting room reserved just for us and we were distracted by crossword puzzles, a few laughs, comfort food, visitors from work, and Anthony.  Anthony came to the hospital, which was the first time I saw him since being admitted the Friday before.  He looked so big and grown up to me.  I'm sure that's what most Mother's feel.  The first child appears so big.  He was so happy. Oblivious to the situation which was a nice diversion, however the reality soon set in when the surgeon, Dr. Chad Wisenauer, came out to let us know the details of the procedure.  All was a success, but it was all done very quick as Brady's heart was not yet fixed.  We were told the next 24 hours were crucial.  We waited while Brady was taken to the Pediatric ICU where he would stay to recover as opposed to going back to the NICU.  We prepared to see him.

I was prepared for many things throughout the pregnancy thanks to doctors, books and the Internet, but you are never prepared to see your child look bad and get worse before he gets better.  But when you are told that things are fixed, that there were no complications, that he will be able to eat regularly, that there were no surprises you are somehow able to stomach the sights you see because you know it was all necessary and helpful for saving your child's life.  So I held my breath through the night and woke to Brady doing well.  Not much better, but doing well which was what they said was to be expected.  I remember actually celebrating that.  Hard to believe you are celebrating at a time like this, but it's a 1 day old, premature baby of only 4 lbs. with a heart defect that has not been fixed enduring a 4 hour surgery and surviving the night without any hiccups.  That was a celebration.

3 Days Old

My discharge day.  My stay was stretched to the limit given our circumstances, which in any other situation I would have been climbing the walls wishing to be home, but in this situation, I dreaded my discharge day for I would be leaving without a baby nestled in his car seat.  Leaving my baby alone in the hospital. . .  . On top of that there was the talk with Dr. Austin. It was very heavy with many words like "prepare yourselves for the worst" and "he may not survive" and "you may be faced with tough decision to make such as life support".  Dr. Austin wasn't trying to be pessimistic or scary.  He was just being a realist and prepare us for the worse.  So we left the hospital, traffic heavy for it was around 5pm, feeling numb and out of my body.  I wasn't sure how to process what we were just told on top of driving further and further away from Brady in that big hospital alone. I was in so much pain.  Terrified and overwhelmed with the feelings in my head and heart.  Throw in some hormones and needless to say I was in bad shape.  I was capable of breathing and that was it.

4 Days Old

Heart surgery day.  After the conversation with Dr. Austin the day before, saying nerves were on edge would be an understatement. And to make matters that much more emotional, Brady was baptized before his surgery. 

So once again, we had our support system and we relied on the fact that this had to take place.  Without this surgery, Brady wouldn't survive so whatever the outcome was, he and we didn't have a choice.  So we sat in the waiting area on the heart floor of the hospital for a long 4 hour surgery.

Brady's cadriologist, one of 20 people in the operating room with Brady, would come out of surgery every hour to give an update.  He was very good about keeping us informed.  At one point he told us that it was like operating on a heart the size of a small strawberry.  And the surgeons were working on vessels and small ducts inside this tiny strawberry sized heart.  The room would get quiet after facts like that, but we went back to what we did best which was distract ourselves with humor, stories, and most of all food.  We were also given a big, red, stuffed heart pillow for everyone to sign for Brady.  He has 2 of these pillows from his 2 hearts surgeries.  The many signatures of the loved ones that prayed for him during his toughest times.  Another distraction were my escapes to the Mother's pumping room outside the NICU every once in a while with my sisters by my side.  That was in itself a distraction as I was still trying to learn such a difficult task.

Finally the surgery was complete and thankfully, a success.  We got to view the black and white video that was taped during Brady's surgery.  A surgery called the Hybrid Procedure which at the time, was fairly new making Brady's procedure one of only about a dozen that had been performed ever at Kosair.  On top of that, Kosair was one of only a handful of hospitals able to perform such a procedure. This made us feel very fortunate to live in Louisville where this hospital resides.  Brady was too critical to travel therefore, his survival rate reduced drastically, if any survival at all, if we had lived anywhere else.  Most hospitals didn't have the expertise for this procedure.  So on top of these facts, we were told that Brady was the first to undergo this surgery as a child who suffers from not only the complex heart defects, but the Down syndrome, stomach defects, and the prematurity.  Luckily this information wasn't made known until after the procedure was complete.  I remember on one of my trips to pump during Brady's surgery, my sisters and I were talking about Brady when a resident who was pumping on her break overheard us and said "You're the mother of the hybrid baby?!"  Thus the birth of Brady's nickname . . Rock Star.

With another surgery complete, being told it was a success, we went to see Brady again and was amazed at how good he looked.  Just a small bandage over his chest and he was resting so peacefully.

The equipment . . .

Of course I realize to say he looked good seems quite odd, but when you live what we lived and listened to survival rates and life threatening circumstances that could arise from these surgeries, I have to admit that at first all the things outside of him breathing was barely even noticed. 

So once again we were told how critical the next 24 - 72 hours were.  A pediatric critical care doctor, Dr. Jan Sullivan, stayed the night with Brady.  Actually slept in a chair next to his bed all night long to ensure he did ok.  Along with 3 assigned to him around the clock, he was watched very closely.  We were told to prepare for Brady to get very sick.  A lot was changed in his body and before he gets better, he will go downhill for a while.  And boy did he ever go downhill.  His body changed, his numbers got bad at times, morning rounds with the doctors were a bit on the gloomy side with zero smiles in the room.  Very somber and serious as it should be, but at the same time, not very encouraging when each and every morning the answer to my constant question of "are we out of the woods yet" would always be "not yet".  Everyone was very optimist and not surprised by Brady's condition as it was expected, however at the same time, everyone was very eager to see some improvements from him.  He had some good moment where medicines were being weaned and the ventilator settings were being lowered, but then there were the bad moments when he would have rough nights.  Critical on a few occasions.  The nurses would tell us when they had to bag him (manually give him breaths) a few times.  Then he had to be paralyzed so he wouldn't compromise his healing with a lot of movement.  Believe it or not, I viewed this as a good sign that after all this small baby had been through, he was actually responding by moving and fighting the equipment and nurses despite being through so much, being so premature, and being heavily sedated and medicated.  That was not only an amazing example of Brady's strength, but exactly how much of a fighter he truly is.  Hard to see your child paralyzed and so limp, but it was for his benefit and a necessary step for his recovery.  Unfortunately there was one very large curve ball, one of many that Brady was getting to ready to throw our way.  Unforeseen, unexpected, and unfortunate.

9 Days Old - Mother's Day

Mother's Day had arrived and my one wish was to go to the hospital very early that morning, by myself, to spend a little time with Brady.  It was nice.  No one was there and the nurses from the night shift had made a few Mother's Day cards for me from Brady.  One with his little feet and hand prints.  Things were encouraging that morning as I was told that enough time had past since his stomach surgery that they were going to do a study in which some dye would be injected into his intestines to ensure the repair sites had no leaks and that they could proceed with feeding if all looked well. It was a good morning all things considered.  I went home to enjoy rest of the day with Anthony as my parents agreed to sit with Brady for a good portion of the day.  Unfortunately it was anything but a break.  Without even getting a shower that day, I received a call only an hour after I had returned home from the hospital telling me that his study showed a leak and that he was being taken into emergency surgery and that we should get to the hospital as soon as possible.

Grandparents watched Anthony.  I got in my car and rushed back to the hospital.  One of the many drives downtown to the hospital feeling out of my body again, feeling like the only person on the road that wasn't doing something "normal".  Passing families on their way to Mother's Day brunches and couples driving with their windows down, most likely soaking up the sun on their day off.  Hard to believe in my rush to Brady, focusing on what was going to happen next, that I even noticed these things, but those are the things that made this whole experience that much tougher.

After arriving at the hospital, one look at Brady and it was obvious he wasn't doing good. The incision site from his first stomach surgery was puffy, red and looking very infected. And the cardiac anesthesiologist was in his room, in his street clothes because he was at home, but on call, holding Brady's little hand gently caressing him telling him "we're going to take care of you little buddy".  The entire scene felt sad and dark.  An uncertain feeling as opposed to the previous surgeries where there was time to prepare and have discussions of exact steps and what to expect.  This was unexpected and unknown as to what exactly was going on inside Brady and what the outcome would be.  Very somber.

So once again, we sat in the big waiting room while Brady underwent surgery, this time with very little distraction.  My parents came with Anthony and we tried very hard to not be nervous, but we were.  I couldn't eat and couldn't focus on anything except what the outcome of this surgery was going to be.  Finally after 3 hours, the doctor came out with an update.  She actually took pictures while in there.  Actual pictures of Brady's intestines.  I looked away.  I want to hear the details, but there are some things a parent just shouldn't see and one of those things is most definitely the inside of their child's belly.  The repair was a success.  One of the three sites repaired had entirely ruptured and there was a lot of stool floating around.  She had to give him an ileostomy bag and a gastrostomy tube or gtube, which would be used to administer feedings.  The ileostomy bag was especially hard to stomach, but the hope was it was temporary.  I couldn't imagine going home with a "poop bag".  The fact that I had no knowledge on the process made it that much scarier.  But I knew going home was far off so no sense in worrying about something that may or may not happen and was so far into the future.  So I focused on him right now and he was very sick.  Very critical.  He definitely had a road ahead of him.  So on top of all these shocking details, the doctor also informed us that based on what she saw, it would be necessary for Brady to be tested for Cystic Fybrosis.  She almost seemed quite positive about it.  I was devastated.  But I somehow managed to put it on the back burner as I was dealing with more urgent issues of would he make it through the night.

Ever since that first surgery, Brady was kept in a very heavily medicated state so at the end of the day, I chose to take care of myself and get rest at home, be with Anthony.  This wasn't as difficult a choice as you would think it would be.  Yes, it was hard to pack things up and go out to the parking garage to my car, leaving my child behind, but I knew he was in good hands and that I had another child at home that needed me just as much if not more.  On this night however, I wasn't going to leave Brady.  I knew he wouldn't even know I was there, but I had to stay.  So because I stayed, my Mom stayed.  I guess as I was watching over my child, she was watching over hers.  I remember standing at his bedside, peering down at him, hoping that he was going to be just fine when the nurse said "Oh no, this just isn't going to happen".  She told me I needed my rest and as a mother herself, she wasn't going to watch as I fell to pieces.  I was housing the milk for this child, keeping it together for my son and needing care for myself (her words) so she literally made a bed for me on the chair and made me lay down.  I actually slept.

I woke the next morning relieved to hear he had a good night.  So relieved.  Listened during rounds, hearing the same numbers that were so foreign to me, yet somehow starting to make sense.  Then all of a sudden a doctor mentioned those words.  The words that the surgeon said the night before but I managed to forget about them.  "Cystic Fybrosis".  I lost it.  "NO!".  This was NOT going to happen.  It couldn't be happening.  I honestly cannot put this part into words not because the words escape me, but because the memory escapes me.  Maybe a person can only handle so much because I don't remember much.  I remember going home, or rather, being forced to go home to get some rest.  I was so mentally drained from the past week's events that I passed out, with my clothes on, the clothes I had been wearing the morning before when I got up on Mother's Day to spend a few hours with my son.  Fell right to sleep on the bed.  Not because I was that tired, but because I was that depressed.  Completely unable to process anymore.  I woke about 2 hours later feeling as if I had over slept an entire day.  I couldn't shower quick enough.  I was so eager to get back to the hospital.  I went straight to the NICU doctor who I felt comfortable with and the one that had mentioned the cystic fybrosis scare in morning rounds.  She sat down with me.  She eased my mind greatly based on the fact that we were tested for this during pregnancy and that yes, Brady still could have it, but it was highly unlikely.  It's like God knew I could only take so much because what I expected to be days of carrying this painful information, it wasn't but minutes when I got to Brady's room that the doctor came in and told us that Brady test negative for CF.  What a relief!

2 - 4 Weeks Old

So the wait began.  And waited and waited some more.  Lots of waiting in Brady's room as he was slow to recover.  And of course he was getting worse before he got better so we had to endure that long road of wondering when the big turn was going to take place.  The turn that would take us in the right direction toward him healing.  It eventually happened.  This is what Brady looked like while healing.  The puffiness due to water retention . . .

Very puffy

Water retention

going down

Getting back
to cuteness!

I hate to even post these pictures but just remember that all these hard times lead to this . . . 

  

If you are that person going through your rough time or know someone who is and you're wondering at this time, "How is this suppose to help?", just look at that picture.  Healing does happen.  And I would answer that question simply by saying that I am no different than you.  I'm no superwoman.  I'm a Mom.  I had a child, was a working Mom,  learned how to do the diapers, the feedings, the burpings, those dreaded buttons on the infant clothes.  I learned how to read my child's mind and know what they needed before they even asked.  I did nothing any different than any other Mother out there.  So when faced with this challenge I did what any other Mother would do.  I freaked out, but eventually stepped up to the challenge and succeeded because that's what us Mothers do.  We care for our children regardless of what the caring consists of.  Many would disagree and say that I'm special or that not all mothers would do what I do, and maybe there are some mothers out there that wouldn't be able to do it.  But I believe those mothers are the exception.  Many don't think they could make it through this, but you would be surprised at how much you do make it through.  I met a mother while in the hospital with Brady who's son was there with very similar health stories.  Unlike me, she didn't know of anything until birth.  When I listened to her story I was amazed at her strength thinking there was no way I could have done what she did.  And when she heard my story she thought the same thing about me.  It's all relative.  And you know what?  Her son had a long journey in the hospital just like Brady, but went home to thrive and be a part of her family and is doing just fine today. 

So back to our story. . . we eventually moved further and further away from that dreadful Mother's Day which put us further and further away from the critical state that Brady was in.  All the doctor's were "amazed that he survived".  One doctor even told us that if Brady had one more heart defect, he most likely wouldn't have survived in the womb.  Obviously not the happiest of conversations, but it made us that much more proud of Brady who in turn made the doctors start to really see and understand his determination to live. 

As we progressed, Brady started to have good bowel sounds, air in his bag (passed gas!), and then his first stool.  Us parents get so excited over our child's first poop.  You don't know the excitement until you see your medically fragile child function perfectly for the first time.  What a relief.  So he could begin to be fed which he needed more than anything in order to heal and grow and get closer to a full recovery.

Of course, typical of Brady, just when he would make you comfortable that things were moving in the right direction, he would throw you another curve ball to make you wonder if this was ever going to end.  Because of his weakened state, the amount of fluid he retained and his underdeveloped lungs, he had a bad patch where he was placed on what's called a high frequency ventilator.  He was already on a ventilator and had been since that first surgery at just 1 day old.  But this vent was much more powerful to give him the assistance that unfortunately he needed.  It was a very discouraging time to know that your child can't breath on his own.  That not only does he require this help, but that he now needs help from an even heavier machine.  It was a very rough day as the doctor were even looking very discouraged.  It was definitely a step in the wrong direction because he will have to be weaned off this vent, before moving to the other vent, before ultimately being weaned off the vent all together.  But as we moved through this very somber state that made everything feel helpless and deprived of any light at the end of the tunnel, what we didn't know was that just 2 weeks later he was going to prove everyone wrong and be off the ventilator entirely.  Proof that things will get better even when better seems so out of reach.  And part of that feeling of better being so out of reach was because we relied so heavily on everything the doctors said.  Not just what they said, but how they said it.  If they looked down, had sadness in their eyes, hesitated, anything.  These reactions dictated how our reactions were.  But what I didn't think about at the time that I think is so important to know is that the doctors and nurses are familiar with all these turn of events and as good as they are at communicating, they aren't going to tell you all will be fine and this won't last.  They don't know this for sure therefore, they will cover their butts.  And maybe they've been exposed to many patients who didn't improve.  It happens.  However, the improvements happen much more than not.  Look at how quickly Brady improved despite all the odds.  Brady's entire life so far was fighting all the odds.  Afterall, these are the doctors who told us they were "amazed at Brady's survival".  Now I don't want to put the doctor's in a bad light because they are amazing and are just doing their jobs.  I'm just saying had I had this insight at the time, maybe my mood would have been a little less sad and a little more positive.

Then the next curve ball, we were told that a head ultrasound revealed ischemia, a lack of blood flow to Brady's brain, that affected his left frontal lobe.  Basically he had a small stroke.  The ultrasound showed a consistent pattern of the ischemia in a couple areas.  We were being told that we just won't know how much damage, if any, Brady suffered from until he gets older.  So we talked to some doctors and nurses and even met with a neurologist, but at that point, I literally had the thought process of "well, if you can't help me and we don't know, then why are we even talking about it?"  We had enough to deal with right now like focusing on things we can control, not the things we can't so let's just let this thing go for now.  It was a little easier to have that thought process due to the fact that were told the left frontal lobe is responsible for our personality and motor skills.  We were encouraged because of how much Brady was moving, responding, opening his eyes and overall showing us all good signs pointing in a direction away from the negative effects of this ischemia.

Now while dealing with these curve balls and very difficult moments in Brady's recovery, I have to say there were a lot of good moments.  Like when he finally opened his eyes, or when were able to dress him, or when he was stable enough to have some mild therapy, or when doctors finally said the words we so longed to hear . . .

"He's out of the woods"

Hearing those words and seeing the doctors that were usually so serious in morning rounds actually smiling, was quite an amazing sight.  Then there was that amazing moment of finally getting to hold Brady for the first time.  6 weeks old and I finally got to hold my child.  The only touching he had been exposed to up to this point was just light touching, holding a little finger or caressing his little head.  It took 4 nurses and 1 doctor to get the task done, but they did it and it was quite the feeling.

Finally, things started to progress in the right direction.  Brady started to come down on his ventilator settings, the large medicine tree started to get weaned to where many drugs were taken away entirely, he started to look more like himself, and his incisions were healing nicely.  Before you knew it, we were told he would be moved back to the NICU very soon.  The PICU had done all they needed for him and there were many things from a neonatal stand point that Brady could benefit from like feeding and therapies.  They were more equipped to help a premature baby toward the road to going home.  So as much as we didn't want to leave the comforts of what was our home away from home we knew that moving to the NICU was a move in the right direction toward taking him home.

June 9th - Moving Day
We moved back to the NICU, the same spot he was first placed after birth, with the same nurses he had.  Everyone was excited to see Brady and how well he had progressed.  It took some time to get used to our new surroundings and the new rules like limited people at Brady's bedside, no eating, and the biggest adjustment for me, no private curtain for me to pump at Brady's bedside. I had to go back to the public mother's nursing room to take care of my pumping needs.  But again, all these inconveniences were worth it because Brady was doing so well.

June 13th  - A Day To Remember
A huge milestone took place this day.  6 weeks after the surgeries and the entire ordeal of recovering from those surgeries, Brady came off the ventilator . . .

No more tube! Other than that first day when he was born, which was such a blur, we had never seen his little mouth.  This was by far the best day up to this point in Brady's journey.  To see that beautiful mouth and watch as his chest rise and fall with his own breaths, no assistance from a machine . . . what can I say?  It was breath taking.

Then to hold him.  Hold him without the vent tube.  Without the chest tubes, the various IVs he used to require and so many other wires he used to have.  Holding him without all of that made him feel like a baby with a little equipment as opposed to holding equipment with a little bit of baby.  And it only took just one nurse to help move him as opposed to the 4 from the first time. Unbelievable.  I won't even attempt to put into words what it was like to hear him cry.  It's just not possible.

June 14th and on . . .
Little did we know at this point that we had a little over 2 more months in the hospital.  Things were definitely looking up, but at times, it felt like things weren't progressing at all.  Brady's progress was at a stand still and we wondered when this was ever going to shift in the direction of going home.  Not that he was doing bad or getting really sick.  He just wasn't progressing or doing things that made us feel like we were moving toward home.  Calling it baby steps would be too generous.  We were frozen.  Very hard to have patience when that happened.  Partly because the support system left, had their lives to get back to which is totally understandable, so it made for some very lonely days in the hospital.  Each day felt like the movie "Groundhog Day" and it was harder and harder to walk into that hospital while everyone else was driving to work or getting ready to do whatever their "normal" day consisted of .  I remember one time encountering a stressed out mother on the elevator who said "We have been here for 10 DAYS! I don't know how much more of this I can take!"  I just looked at her and said "I know what you mean".  The hospital had its way of sucking the life out of you to the point where the days started to run together.  You forgot what the weather was like outside and you had no clue what was going on in the world because your life consisted of what was going on inside the 4 walls of the hospital.  It was long and tough.

But the good moments made it better, like watching Brady's numbers rise each and every time he was held or watching him do so well on the bottle when the speech therapist worked with him.  And I wasn't totally lonely.  I got to know the nurses pretty well, I had my books and crossword puzzles and we would get visits from the Down Syndrome of Louisville organization who were amazing with the gifts, food, and various pamphlets of information.

So the days, as much as they started to blur together, did move along.  We were moved out of the high tech heart room to a bed out in the NICU then eventually to the cardiac suite in the back of the NICU, which was nice because it was away from the noise.  There were various battles while back in this room like dealing with Brady's reflux, going through many studies in radiology to make sure his feeding tube was in place, but there were good times as well like the fact that he finally came off his oxygen.  I mean, no tubes up his nose at all.  He was breathing room air for the first time ever!  And while back in this new area, we experienced Anthony's first time meeting Brady.



Here are some pictures of Brady, good pictures, while in the hospital.

But we got through it and not only did Brady survive all those surgeries, but he survived collapsed lungs, blood clots, wet lungs. He was put on steriods, numerous antibiotics. He was jaundice at birth.  He had numerous chest tubes and IVs. Blood draws so often that he had enough transfusions to fill his body with blood 9 times. He was on so many pain medicines that he became addicted and had to slowly be weaned from them so his body wouldn't go into shock.  He had regular, invasive eye exams and was at risk of losing his fingers due to lack of blood flow from an IV.  He had an arterial line, a central line, a PIC line in his head.  But we made it through.  He made it through.  And it wasn't despite all these things, it was because of them.

August 20th - Going Home!