"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 we 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 us when we are 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, our 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 our 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 our lives. And at times when looking back on the experience I feel like I was having an out of body experience, having no idea how we made it through. Unbelievable tests of strength on both Brady and our parts. But we made it and that's the important part to remember as you move forward through this portion of the story. Remember that as you read such depressing and scary situations that there are also those situations when we finally got to hold him and dress him and see him smile. It was the toughest journey of our lives, but it was also a massive turning point in our lives that made us view life so differently, a greater view. It made us better people. And as I look at this thriving, amazing, beautiful, completely determined baby boy that shows that same determination he had in the hospital with such simple daily tasks, 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 (all just for us - about 20 of 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 surgeron, 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.
We were prepared for many things throughout our 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 we held our breath through the night and woke to Brady doing well. Not much better, but doing well which was what we were told to expect. We actually celebrated 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 carseat with us. Leaving our baby alone in the hospital. On top of that we had a talk with Dr. Austin, the heart surgeon that we talked to while pregnant and who would be operating on Brady the next morning. 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 scare us. He was just being a realist and wanted us to be prepared. So we left the hospital, traffic heavy for it was around 5pm, feeling numb and out of my body. Joe was driving and neither one of us said a word. We weren't sure how to process what we were just told on top of driving further and further away from Brady in that big hospital without us. 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 no shape to be a wife or a mother to Anthony. I was capable of breathing and that was it.
4 Days Old
Heart surgery day. After our conversation with Dr. Austin the day before, saying we were nervous or on edge would be an understatement. And to make matters that much more emotional, Brady was baptized that morning before his surgery. He was baptized before his first surgery just 2 days prior by Joe's Mom and my Dad, who are both Eucharistic Ministers, but a more official baptism took place before this surgery by the hospital's priest.
So once again, we had our support system and we just 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 us 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 and they are placed at the top of his dresser. 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. Joe & I were asked to come back and 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 we didn't find out this information 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 for us 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 optomistic 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 occassions. 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. We viewed this as a good sign that after all this small baby had been through, that 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 we knew it was for his benefit and just focused on it being a necessary step for his recovery. Unfortunately there was one very large curveball, one of many that Brady was getting to ready to throw our way. Unforseen, 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 the rest of my day with Joe & Anthony as my parents agreed to sit with Brady for a good portion of the day. There was nothing 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.
We arranged for my parents to watch Anthony. Joe wasn't home so he would meet me at the hospital so 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 carressing 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 both us and the surgeons and discussions of exact steps and what we could 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 our 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 we were told it may be just for the next 4-6 weeks. Can'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 hte future. So we 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, with my family. 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 both Joe & I 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
2 - 4 Weeks Old
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 our journey. To see that beautiful mouth and watch as his chest rised and fell 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 Joe or I held him, 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 puzzled 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!