Believe in Bella (Bella’s Story)
Allow me to introduce myself…
My name is Isabella Lauren Bobay. I was born on August 19th, 2015. I weighed in at 5 lbs. 8 oz. and 18 inches tall. Some of you might be surprised to see me. Let me explain my journey so far.
16 weeks into my mommy’s pregnancy my heart rate dropped from 120 to 60 beats per minute. The doctors told my parents that things didn’t look good and they thought I wasn’t going to make it. There was too much fluid forming around the heart and it was likely that I was going to go into heart failure. My parents didn’t give up on me though and went to the doctor every week for 19 weeks straight to check and see if a heartbeat was still there. They showed up at week 20 to meet with the cardiologist because this was the first opportunity to get a good look at the electrical structure of the heart to better understand what was wrong. Everyone was really shocked to see my mom and dad at that appointment because no one thought I was going to be around. At this appointment, it was confirmed that I had 1.) Left Heterotaxy Syndrome 2.) Heart Block 3.) Narrowing of the pulmonary ventricle. This was quite overwhelming for my parents to hear. The odds of getting Heterotaxy is 4 in 1,000,000. Not the type of lottery that my parents were hoping to hit. They thought everything was going great up to this point with the pregnancy, and the doctors just slammed them with what appeared to be a death sentence. I wasn’t scared though. I had so many people praying for me that it didn’t really matter what the doctors said. I wasn’t going anywhere! My dad told those doctors that they better get used to seeing us because we plan on sticking around for a while. Little did those smart doctors know that I would be holding that 55-60 heart beats per minute for a long, long time!
Once the 30th week of the pregnancy came around my parents were able to set the date for a scheduled C-section. My mommy got her way and was able to schedule my arrival on September 10th. I had other plans though. On August 18th, we had a cardiologist appointment to check my heart out to make sure everything looked normal, relative to all the issues I had going. There was some fluid that showed up in my stomach on the ultrasound. The cardiologist was pretty concerned, but thought I would be better off staying in my mommy’s tummy rather than trying to deliver me and immediately placing a pacemaker in a 35-week old baby. I decided to make my mom miserable that night and give her some of the worst back pain she has ever had. She woke up the next day and decided to go to the doctor to get things checked out. They hooked her up on the monitor and found out that she was having contractions that are 5 minutes apart. They sent my mom to the hospital and I think you have probably figured out the rest of the story from there…
Day 1 - Baptism August 19th, 2015
Well our baby girl finally arrived. Words cannot describe how excited we are to meet her. She has battled and fought her way through the last 5 months against all odds. We no longer have to hear the comment “We’ll just have to wait and see until she is born to fully understand her issues.” Isabella came out crying but quickly needed to get some help breathing so she was immediately intubated. It is a scary and lonely moment to see your new baby girl get taken from you only after seeing her for a brief second. It seemed like we were waiting for years after they took her away from us in the OR to find out how she was doing. We requested a priest to baptize Isabella, but when he arrived he was unable to see her because she was getting her central line placed. The priest had to leave for another emergency call, but it was really important for us to get her baptized as soon as possible because of her instability. Unfortunately Laura was not able to leave the Post Op unit until she had time to recover from the C-section. We both agreed that I should head to the NICU so that Bella could be baptized. When I arrived, the 15 or so doctors and nurses that were huddled around our daughter stepped away from her and without hesitation I baptized our little girl. It was a very brief baptism because they still had more work to do on her. I had tears in my eyes as I poured the holy water on her head. Immediately she opened her eyes and stared right into mine as if to tell me that everything was going to be alright. Words cannot describe the calming presence that I felt when she locked eyes with me. The emotions of the day have been overwhelming and exhausting, but we’ve been waiting for this moment for a while now. Our little girl continues to defy all odds and her resilience to the numerous challenges that are thrown at her is truly remarkable. She is a fighter!
God Bless & Believe in Bella!
Jason
Day 2 – Pacemaker Surgery August 20th, 2015
Last night Bella had an issue with the line in her belly button and had a pretty bad bleed where she lost quite a bit of blood. She wasn’t clotting well, which didn’t help her situation. We spent the majority of Day #2 on the edge of our seat. It is so hard to see Bella laying there helplessly as vitals go up and down like a rollercoaster all day long trying to balance one thing only to significantly impact another. We received confirmations that her heart is definitely located on her right side along with her stomach, which confirms the Left Heterotaxy diagnosis we received during our ultrasounds. We also found out today that she has multiple spleens because of the replication due to Heterotaxy and her liver is on the left side. If you haven’t figured it out by now, Heterotaxy is a disorder that results in certain organs forming on the opposite side of the body. It seems like a pretty simple problem at first glance. Who cares if the organs are in the wrong spot as long as you have them, right?!?! Wrong! Think of it this way…if you are buying a lot and want to build a house, you really shouldn’t build your house on your neighbor’s lot next to the one you bought. It’s likely to cause a few problems and your neighbor won’t be happy! Basically, Bella’s heart ticked off a few neighbors and they cut the electrical in her heart and punched a hole through the drywall.
The electrical issue in her heart is called Heart Block. We knew up front that she would likely need a pacemaker to address this issue because the top two chambers of the heart were throwing signals to the bottom two chambers that apparently couldn’t catch very well. She battled all day today to correct the Premature Lung Disease that she had when she was born. The heart rate continued to linger in the low to mid 50’s. The doctors were trying to wait as long as possible to do the pacemaker until her vitals went up. Taking a tiny 35 week old into surgery with clotting issues would not be the ideal situation, however it was clear she needed to be paced sooner than later. In addition to the Heart Block, she also has a hole in
her heart that will need to be repaired down the road. It isn’t an immediate concern because it seems to be managing alright for now, but she will need an open heart operation once she turns 4 to 6 months old.
The immediate need was to get the electrical issues taken care of and they had set our expectation very early that a pacemaker was imminent. Unfortunately, Bella would have to be transported to Peyton Manning Children’s Hospital, which was 5 minutes away to get the procedure done. In the afternoon today we experienced a couple of crashes that really woke us up. The simple joy of just having Bella arrive yesterday quickly wore off once we saw the chaos that comes when your little girl starts having major issues. We weren’t really convinced that if things got much worse that she would be able to have a chance to get the pacemaker unless they admitted us to the PICU at Peyton Manning Children’s Hospital. At least that way, we could be rushed down to the OR for the surgery because this was the team that was specialized in the cardiac issues that Bella needed addressed. Unfortunately, a short trip up the street was necessary in order to get the pacemaker done. It would take 20 minutes to pack her up, 5 minutes to get there, and another 20 minutes to unpack her. God forbid if she crashed and we never get a chance to get that pacemaker in her. After a few candid, spirited, and slightly loud conversations with the doctors, they agreed to transfer Bella to Peyton Manning Children’s Hospital and she was admitted into the PICU this evening. Within a couple of hours of being admitted, they took her down to get her pacemaker placed. The surgery went well and she is back in the room with me right now. Laura snuck out on a furlough from the Women’s Hospital to come see her for a little bit before and after the pacemaker. They wouldn’t let Laura stay here because she is still recovering from the delivery. The entire staff has been great here. As you can see in the picture, Bella has a new monkey friend sleeping with her and they gave her a new pair of pink slippers/shoes. Daddy approves!
God Bless & Believe in Bella!
Jason
Day 3 – Exploratory Bowel Surgery August 21st, 2015
The pacemaker settled in quite nicely last night and Bella began her new rate of 80 beats per minute to slowly bring her heart rate up. The cardiac surgeon was very pleased with her progress overnight and this morning he bumped it up to 90. We were told that they will gradually bring her pace up so that they don’t put too much stress on her heart. She has been acclimated to this low rate for quite a long time and she could go into shock if it was raised to high.
Bella’s stats started to decline in the late morning though. Her bowel/intestine were acting funny. They sent some dye down the feeding tube and it never made it into the bowel at all. It looked like there might have been a blockage and the doctors were getting really concerned. We met a new team of general surgeons today because this would be the crew that would operate on Bella’s intestines. We knew that she was at risk of bowel issues on a condition known as malrotation because 50% of the kids that have Heterotaxy typically have this issue. She still wasn’t exactly stable from the pacemaker operation last night, but they had to take her in to see what was going on inside her belly. It would be considered an exploratory surgery because they weren’t exactly sure what they would find until they got in there. You know it’s bad when the surgeon is saying that they really don’t want to do the surgery, but we don’t have any choice right now because her condition was getting worse. Sign here. We have now signed 6 consent papers over the last three days and 3 of them came today. This surgery was a scary one because her clotting levels weren’t exactly great and the risk of bleeding was even greater than normal. The bowel obstruction or malrotation was always going to be a potential concern with Bella, so regardless of what happened in this surgery we were probably going to have to do this eventually. We just weren’t thrilled that it would be 12 hours after her last surgery. It started around 12:45 pm when they
would need to establish another central line. By 2:40 pm they had put her stomach back together. The surgeon removed her appendix to free up some space, but didn’t see any sign of distress on the bowel like originally anticipated. A few kinks here and there, but nothing that would explain there was something wrong. The good news is that this is one more organ to check off the list on things that could be causing her poor condition. The bad news is that she has another wound to deal with and needs to recover to get her strength back.
As If that wasn’t bad enough, around 6:30 pm her blood pressure dropped significantly. It lingered there for about 20 minutes. The cardiologist began ramping the pacemaker up to try to increase the blood pressure, but nothing seemed to work. He took her heart all the way up to 150 beats a minute with no impact on the low blood pressure. The Intensivist and Cardiologist took their conversation outside of the room in a private meeting while Bella’s blood pressure lingered at 40 over 19. Meanwhile, the nurses were administering another blood transfusion in addition to some calcium. The doctors came back into the room after about 10 minutes with a somber look on their face as they began talking to me about ECMO. I won’t even get into what ECMO is, but it isn’t pleasant and there are a number of risks given Bella’s situation. The best part of the day happened next when Bella decided to flip the doctors the proverbial bird in the form of a rapid increase in her blood pressure. This little girl might not be able to talk yet, but she made a loud statement with that maneuver. It turns out the combination of the blood and calcium was having a positive impact on the blood pressure. ECMO discussions were tabled and she continued her seemingly endless journey of grinding through these issues.
We are really hoping our girl can catch a break and maybe have a day where they don’t need to make an incision. I think getting her mommy back to the room will do wonders. Laura has been pretty much locked up at the other hospital the last few days while Bella and I hang out in the Pediatric Intensive Care Unit at Peyton Manning Children’s Hospital. She has spent the last 8 months hearing her mom’s voice every minute of every day. I think these two need to be reunited ASAP. Who knows, maybe Bella just needs to hear her mommy’s voice to help her climb this mountain.
On the bright side even after all of that chaos she was put through today, Bella responded to my kiss on her forehead tonight by opening up her eyes for a brief moment to say hello. Words cannot describe the resilience of this child. Fight On Bella, Fight On!
God Bless & Believe in Bella!
Jason
Day 4 – How About Some Positive News?!?! August 22nd, 2015
Late last night they had to move the ventilator back up a little bit because it had slid down too far and suctioned a little blood. Respiratory Therapy came in and was adjusting the ventilator. The paparazzi (me), was finally able to see her face for the first time and sneak a picture of her from over the top. Consider this her first selfie and our first glimpse of that beautiful face without all of the tape and tubes in the way. She also had a phenomenal night, relative to the previous few days. She has made little baby step improvements that can’t be ignored. While the nurses and doctors cautiously say this is a step in the right direction, I’m going to go ahead and do a few back flips, celebrate the moment, and tell my girl how great of a job she is doing. Intensive Care Units aren’t allowed to steal smiles and positive attitudes from its patients and families. We may shed a few tears here and there, but gosh darn it we are going to stay positive and donate a few contagious smiles back to this place!
P.S. My sister and I added a few decorations to make this room feel a little more like home! Thanks for the help big sis!
God Bless & Believe in Bella!
Jason
Day 4 – Our First Disagreement August 22nd, 2015
Have you ever had one of those discussions with your child where you wanted them to do something because you had their best interests in mind only to have it backfire in your face resulting in a meltdown of epic proportions? My wife might tell you that this situation is not limited to just kids. If you have a child over the age of two and your answer to this question is NO then: 1.) I would love the opportunity to meet you AND 2.) You need to go to confession.
Bella and I had a situation like that tonight because I wanted her to simply get off her butt…literally. The reason is that cardiac kids, similar to all immobile patients in a hospital, are at a very high risk of developing a pressure ulcer without proper turning and positioning. Some of you are laughing right now because you know I have made a career out of this type of conversation at hospitals. Others might be thinking: “Why would you ever try to move a baby that has multiple incisions on her lower and upper abdomen?” Well, unfortunately pressure ulcers are an equal opportunity employer for immobile patients and frankly don’t care what type of artistic incisions you are bringing into the Intensive Care Unit. The irony here is that the nurses are phenomenal. I can’t say enough great things about how they have treated our little girl. The group in this PICU have pretty much adopted us as VIP guests and have generously given us access to the parent sleep room every night we have been here. With that said, everyone gets busy and I just thought I would take the opportunity for the nurse and I to take a peek at my daughter’s backside. Needless to say, Bella was about as happy as Bob Knight the game he threw the chair across the gym floor! It may not have seemed like the right decision for her, but I only had her best interests in mind. Sorry Bella, there is no way that I am going to allow a pressure ulcer to show up on your rump. I’d never forgive myself. After that meltdown, she never really gained her composure back and needed a dose of morphine to settle herself down.
Believe it or not, today ended up being a great day! For once she made progress throughout the day without having to take a step back into surgery. Although I was disappointed that she needed morphine to calm herself down, she gave us a little glimmer of her fire and attitude that has gotten her this far. It will only be a matter of time before these stats get down to normal levels and she can get herself back on the road to recovery. One more day closer to getting home.
God Bless & Believe in Bella!
Jason
Day 5 – Wake Up Liver…You’re Late for Work! August 23rd, 2015
Hello Liver,
This is Bella’s dad talking. I know you think you are a very important organ and sometimes like to act like you are the MOST important of all the organs, but I really don’t appreciate the crap you are doing to my daughter right now. The doctors did an ultrasound and say you are structurally fine, so it is time to get your SH*T in gear. Big deal you are on the opposite side of the body. Tell that to someone who cares. The Heart, Stomach, and Spleen(s) have settled in and aren’t throwing themselves a pity party so deal with it. When I traveled to Ireland I was a little messed up for a second when the steering wheel was on the wrong side of the car and we were driving on the opposite side of the road, but I got over it and so should you.
Hey Bella,
Remember how relaxed you were when you were kissing your biceps and practicing your thinking pose in those final days leading up to your birth. Well it might be a good time to channel your inner “chill mode” and stop blowing a gasket with these nurses. I know you feel all sassy with your new headband and all, but it would be nice if you could settle down a bit and just cuddle with your monkey. Those pesky doctors are starting to talk about ECMO again and we don’t want to get any deeper into those discussions. You know your daddy always likes to win and prove these doctors wrong. You seem to beat to your own drum and I’m cool with that, but I’d love for you to put this ECMO talk to bed. Don’t get me wrong, I’m not asking you to cheat or deflate footballs. I am just asking for you to wake up your liver, keep your cool, and get that heart pumping stronger. I’m not sure how much more time we are going to be able to wait. So if you could get crackin’ on this sooner than later that would be great!
P.S. Your daddy loves you!
God Bless & Believe in Bella!
Jason
Day 5 – The Drainage Tube & The Mini Victory August 23rd, 2015
Earlier today, all of Bella’s stats were going downhill. The Liver wasn’t doing its job, the Kidneys were slowing down urine output, the Lungs were getting large amounts of fluid on them, and her clotting levels were getting really bad. A number of scans were done to see what was going on. The group of Intensivist doctors and our Chief Electrical Cardiologist went into a room to have a little pow wow. We are starting to learn that it isn’t a good sign when they say: “I’m going to take these scans and discuss with my colleagues the appropriate next steps. I’ll be back shortly.” We have been in Bella’s room around the clock and for the most part we have been involved in all of the discussions up to this point. There isn’t many that are going on behind closed doors. We were beginning to get worried that there was some disagreement on what the next steps should be for Bella. These doctors are unbelievably smart, but you could tell by their body language that some were optimistic and some were going to take the role of Debbie Downer.
They came out of their meeting and sat us down to tell us what was going on. The Lungs appeared to have a significant amount of fluid on them. The heart for the most part was doing a decent job, but there were questions on if it was optimizing at the levels that it should be. The Liver just seemed to be hanging out and taking a vacation because it was not helping anything at all. The problem was that they weren’t sure if it was because the Heart wasn’t doing its job, or if the Liver had some kind of internal damage. These things are hard to tell because the Heart acts as the fuel for all of the organs and blood flow, the problem is that the fuel source isn’t exactly reliable. The Liver is blaming the Heart and the Heart is blaming the Liver. Something tells me that the doctors might be doing the same thing behind closed doors. They did come to a consensus though that they will need to install a drainage port on her right side to get rid of the fluid on the Lungs. The crazy part is that we needed to pump fluids to supplement all of her other deficiencies. We
quickly started to realize why they met behind closed doors because if this didn’t work then we were going straight to ECMO. The Cardiologist looked me square in the eyes and said: I haven’t lost hope, but if I do I’ll let you know.” He meant it in a good way regarding his transparency, but I think he is slowly learning how to deal with us. I replied: “Good luck convincing us there is no hope because you will NEVER convince us of that!” He can worry about the negative stuff all day, I’ll make sure to remind him of all the positives.
In its simplest form, the ECMO machine acts as an artificial Heart and Lung for Bella. It would take all of the stress off her and basically take full control of her breathing and heart so she doesn’t have to. This sounds like a really nice vacation for her given all the adversity she has dealt with over the course of 5 days. The challenge is that she is barely a candidate for this because of how tiny she is and the Liver could be damaged permanently by the ECMO machine if it isn’t functioning properly. They would need to put a big line in her carotid artery and because she is so small she would never be able to access that artery again. It would damage the artery beyond repair for future use. I won’t get in to all the other risks because they are too disturbing, but you could probably figure it out.
The surgeon came in and put the drainage tube into Bella’s right side to extract the fluids. He ended up draining 35 cc’s of fluid from her right Lung. This may not seem like a lot to you, but if you have looked at the size of that baby laying in that bed this was a very significant amount. When we walked back into the room after the procedure, the Cardiologist was dialing up the pacemaker to 100, 110, 120, 130, & 140 beats/minute to see how her blood pressure would respond, if at all. They did this 2 days ago when she was having issues and it didn’t work. What happened next gave me chills up and down my body! Her blood pressure was responding to all of the levels that he was dialing up on the pacemaker. In fact, she seemed to tolerate the 120 beats/min the best so he programmed her at that and as I write this to you right now at 11:45 pm she is tolerating it quite well. The cardiologist warned us that she may look a little like the Michelin Man by the end of the night due to all of the fluids they are pumping into her. You can tell by this picture that she looks like she went a few rounds with Mike Tyson. If I have to look at an adorable puffy faced cutie for 1 night so that she can get stable I would take it with no questions asked! Tonight’s a big night for her. They said earlier today that she would likely be on ECMO by the end of the day if the drainage tube and fluids didn’t work. I’m happy to say that Bella isn’t going anywhere in the near future, but how she performs through the night will be very telling on her condition and next steps. It’s going to be a very long and hopefully uneventful night! I’ll be right by her side along the way.
By the way…as the cardiologist was walking out the door tonight after he paced our girl at 120 beats per minute I stopped him and looked him dead in the eye and asked him one simple question…Can you give me something positive before you leave? He SMILED, pointed at our girl and said: “You just saw it!” This guy is an unbelievable doctor. He is basically working 24/7 on our daughter to get her better clocking some of the craziest hours I’ve ever seen. I have to admit that I’m looking forward to seeing a few more of his smiles because believe it or not his are a little contagious!
God Bless & Believe in Bella!
Jason
Day 6 – Love & Progress August 24th, 2015
I’m excited to tell you that this may be a slightly shorter post because the day was extremely BORING and trust me I mean that in a good way. A 1-pager at this point is a huge success, given the novels from the past few days! We said that last night would be extremely important and indeed it was. Bella’s rates didn’t come down substantially, but for once it didn’t skyrocket either. That was huge! She had a full day of bonding with mom, which was well needed for both. There is no doubt in my mind that the best medication for this little girl is a tall dose of motherly love. Laura is feeling much better and enjoying her new digs over here at the PICU. She was able to spend the night for the first time here last night in our glamorous Parent Sleep room. The Holiday Inn has nothing on this place! I’m still working on getting a picture of her up here. She is a bit camera-shy, but I told her that people want to see that she is doing well. Don’t worry, that picture with Laura and Bella is coming soon so stay tuned! If you ask me, the picture of Bella holding her mom’s pinkie above isn’t that bad at all.
I spent the first half of the day at the hospital and the 2nd half surprising my son by picking him up at school today. We are trying to keep things as normal as possible for our kids. I can’t emphasize how much help we have had from our family. Laura’s parents moved down to Indy in June and her sister Colleen and brother-in-law Joe are local as well, which has been very helpful as Laura and I had to divide and conquer being at separate hospitals over the first 3 days. My parents have taken refuge at our house trying to keep things in order around there with my dad mowing the lawn and my mom attempting the hardest task of all trying to get our Tori to bed as she is cutting every single tooth in her mouth. Quit laughing Laura! You know how hard she is to put to bed! My sister, on a couple of occasions right after we had the baby, had taken on the crazy task of watching not only her 3 kids under the age of 6, but also our 6-year old Tommy and 18-month old Tori. You can only imagine the puzzled looks she is probably getting when she has all 5 of them under the age of 6 out together in public! Sorry sis! My brother and sister-in-law drove down as well when they heard about the baby coming early. It’s always nice having your big bro there when you are going through the craziest event of your life! He’s a good man! We can’t thank everyone else for all of the words of encouragement and offers for help. As you can see, we have an army here helping us out and we are in very good hands, both at home and at the hospital.
As I mentioned earlier, we made some great strides today on a number of stats, but we are cautiously optimistic. We’ve realized over the last few days that we really can’t get too high on these new outcomes until she can prove it for a few days. I delayed writing this post because I didn’t want to jinx the progress that she had made. So what’s next? Her performance today has the clinical team pointed in an old but new direction. The possibility of Bella having a metabolic disorder was brought up a few days ago, but it was quickly discarded. At that time, she had a number of things going on that needed to be fixed and she didn’t appear to have the full presentation of a metabolic disorder. We’ve heard these disorders are pretty rare, but nearly everything that Bella has gone through up to this point has been rare so you can’t really use that excuse on us. We were also told that there are only 2 doctors in the state that handle this type of condition and they happen to be in downtown Indy at Riley Hospital for Children. There is a possibility that if she is confirmed to have this metabolic issue that we may be taking a field trip to Riley in the near future. Not too excited about the thought of that! The PICU team and doctors here at Peyton Manning Children’s Hospital have learned all of the intricacies of our baby girl and know her like the back of their hand, not to mention we really like them. We are feeding them pizza, cookies, candy, supplying hand hygiene devices, sharing Disney World stories and the list goes on and on and on. I can’t imagine having to go through the painful transition of introducing our daughter to a brand new team, not to mention lose the cardiologists that have been
following us this whole way. I guess we will cross that bridge if we get there. Please keep those prayers coming because the last 36 hours, although still unstable, have been significantly better than the first few days.
To add insult to injury, we lost our 12 1/2 year old golden retriever named Lilly 3 weeks ago. So we are going to celebrate the great day and partake in some doggy therapy. This little ankle biter in the picture below is a little too small for us, which is why I requested a golden retriever for our next therapy session! They have 17 dogs here. Surely they must have at least one golden in that group!
God Bless & Believe in Bella!
Jason
Day 7 – Random Thoughts of the Day August 25th, 2015
Day 7 – On to ECMO August 25th, 2015
Bella will be going on ECMO within the hour. She took a left turn last night, but hasn’t tapped out yet. She just made it perfectly clear that she needs some help and decided to make the decision for us. She’s ready to FIGHT and so are we. Prayer up!
God Bless & BELIEVE IN BELLA!
Jason
Day 7 – The Power of Prayer August 25th, 2015
I don’t even know how to begin to describe this day. We really thought we were making the turn at the end of day yesterday and into the early morning hours. We continued to get our blood draws every two hours. I stayed up to make the 2 AM and 4 AM draws and then fell asleep on the couch next to Bella. I woke up to a tap on the arm and the respiratory therapist telling me I might want to wake up because it’s about to get busy in the room. I’m thinking to myself: “what could have possibly happened in the last two hours?!?!” She was cruising through the night and all of her vitals were getting better. Apparently her lungs decided that they just could not go anymore and a “White Out” occurred causing all kinds of problems.
Moments later, Laura and I had 18 sets of eyes staring at us with that somber look on their face. It seemed that everyone in the hospital showed up to our room. The
conclusion from the brain trust: “We still can’t fully understand why your daughter is not responding to our treatment, but it seems as if we have run out of time. You need to consider putting her on ECMO.” Uh that sounds great, but I’d like to take what is behind door #2. The next hour is spent by the Medical Director explaining the ungodly amount or risks involved. We are told that these risks are much greater than other ECMO candidates because of all the other extenuating baggage that Bella is carrying with her. We leave this meeting demanding to speak with Dr. Steinberg. His colleague was present at the rounds this morning, but we had to hear it from him. Dr. Steinberg is the Chief Electrical Cardiologist that pretty much understands Bella’s condition better than anyone else in this world. He has become a good friend in only a matter of 7 days. He showed up to our room and joined Laura and I at Bella’s bedside. We looked at him with tears in our eyes and just asked him one simple question: “I know you have 4 kids of your own Dr. Steinberg, but what would you do if this little one right in front of us was yours? It hit him hard. Like a ton of bricks. We made it personal for him, but he said exactly what we were expecting him to say and basically confirmed that this was pretty much our only hope. Laura and I kicked everyone out of the room and we just looked at our little girl. She was swollen all over, her incisions were oozing, her lungs were basically done, her clotting levels got worse, her kidneys were stalled, and her liver seemed non-existent. Nothing was going right. We whispered into Bella’s ear that we were going to give her a half hour to show us something…anything to not make us put her on the ECMO machine. There was no doubt about it that we had a choice on this matter. The risks were the following: 1.) The tube was huge and might not fit into her little veins in the neck…She could bleed out 2.) If we were able to get the line in, then we were at risk of clots to occur causing her to have a stroke. 3.) Premature babies like Bella have a very hard time handling blood and the brain is still very limited on the ability to handle any small amount of blood. Blood on the brain is awful in any scenario, but with Bella it would be exponentially worse.
Bella didn’t give us any signs of getting better so we moved forward with the ECMO decision. I told Dr. Bob as they wheeled her away that they are about to witness an unbelievable performance from my daughter. He just looked at me with skepticism and said I hope so. He wanted to believe, but his medical knowledge and vast experience was clearly getting in the way of his optimism and faith. They were going to go in through the neck. They worked on getting the tube cannulated for nearly 2 hours. We were under the impression that the entire process of getting her up on ECMO would only take an hour and forty-five minutes.
Right when the surgeon opened the door his face told the story. He wasn’t able to get the tube into the neck. Her vein wasn’t big enough. It got worse. He also said that there is a bleed under her clavicle that was nearly impossible to get to without cutting open her chest. He just looked at us. He didn’t say anything. I asked him
what he needed from us. He stated that we needed to make a decision. He said that she wouldn’t survive if we opened her chest. His comment was: “I can’t say it is a 0% chance of survival, but fatality is highly likely. We lost it. He just threw us the right uppercut that landed us both square on the mat. The one you see on TV that you pray never happens to you. We just stood there trying to comprehend what he just said. Everyone was crying and I didn’t know what to say so I went to the first thing that came to my head. Can we hold her? It’s been 7 days and we have not had a single chance to hold our girl because of how unstable she has been. That by itself has been gut wrenching. The surgeon said that they could sew her back up and pack her so that we could hold her while she is still alive. Is he really saying this? It feels like a bad dream. This can’t possibly be the way that this journey ends. It’s supposed to be a happy ending, where we take her home to meet the kids and begin our new life as a family of 5. As we sat there trying to gather ourselves we realized that if we sewed her back up that would mean we are giving up. Before every surgery we whispered, promised, and pleaded to Bella that WE WOULD NEVER GIVE UP ON HER AND WOULD ONLY QUIT FIGHTING WHEN SHE TELLS US SHE IS DONE! FIGHT BELLA FIGHT! After a few minutes, we looked up at the surgeon and told him to do it. To cut her chest open, fix the bleed, and get her on ECMO through the chest. Going through the chest was never really an option because of the pacemaker. We would contaminate it, by opening her back up. We didn’t care about the odds. The odds don’t matter with this girl. They never have and they never will. I believed what I was saying, but there was a piece of my head that was saying this is it. It’s over. You lost her. She can’t possibly get through this. It would have to be a miracle. I still believe.
The surgeon left the room and came back 30 minutes later. He said that something happened. The bleeding below her clavicle stopped. They were able to put pressure on it and it appears to be clotted even after all the blood thinners had been put into her body to get her prepped for ECMO. This was supposed to be that dreaded bleed out situation they were talking about. He told us that they are prepping her for the chest surgery and will attempt to get the ECMO started that way. Nearly 45 minutes later, Dr. Bob comes in to tell us that she is up and running on ECMO. What?!?! You have got to be kidding me. I believe in divine intervention and something happened today that we will never be able to explain. Regardless of the outcome from here on out, today was proof that it is out of our hands and it rests in the hands of the big guy upstairs. They gave her NO chance. NONE! ZERO! And trust me they wanted her to win just as bad as we did, but they have seen this before and they knew what she was up against. Words cannot describe what this day was like for us. I’m upset with myself because I wavered. I doubted her just for a split second so that we could selfishly just hold her. You will never know how close we were to saying just give her to us. Let us hold her. We can’t take this any longer. Bella, you put on a performance that these doctors
and your parents will never forget in the foreseeable future. We keep making these bold statements and you keep backing them up.
Right now at 10:40 PM, our little girl is sitting in front of us with her chest laid wide open. They cracked her sternum and need to keep it open because of all the swelling that is taking place. The surgeon had to navigate around the pacemaker to connect the ECMO machine. He also had to tunnel a new drainage tube from one side of her body to the other so that it would stay away from the pacemaker and drain the left side of her lung. With all that said, everyone is telling me that she is doing substantially better than she was earlier today before ECMO. Wow, that seems impossible!
I will end this rollercoaster post with an obvious statement. The power of prayer is real! We are normally a very private family when it comes to personal matters. I know that may come to a shock to you as we spill this journey all over the internet, but all bets are off when you mess with our family. We’ve had countless people offer to do all kinds of generous things for us during this marathon. We only ask for one thing: PRAY FOR BELLA! The next 24 hours are going to be critical, but that should come as no surprise for this little girl.
Thank you for all of your prayers today. There is no doubt in my mind that you participated in a miracle!
God Bless & Believe in Bella!
Jason
8 Days with an Angel August 26th, 2015
We knew ECMO was going to be a big risk. It was our only hope, but last night didn’t go well at all. Bella’s brain began to bleed. They took an ultrasound in the morning and identified the issue. The bleed wasn’t just isolated to one area. There
were numerous bleeds. We were told that they would retake the ultrasound at noon and if the bleed had gotten worse that we would need to take her off.
At the next ultrasound at noon it got worse. The areas that were bleeding began to merge together. Our biggest fear was realized. She was too young and her brain was too immature to handle it. They conducted an EEG of the brain waves and it showed that they were a flat line. Bella was still alive and on the ECMO machine, but her brain had no activity. We were told by the medical director that we would have to go off ECMO and that we should call our family to come to the hospital. We weren’t sure how to explain this one to our 6-year old. He had not seen her yet because we were certain that we’d get through this, but she looked terrible. We really wanted him to meet her though because we didn’t want to regret it down the road. The nursing staff helped us clean her up and make her look presentable by covering up everything but her face and little hand. We brought Tommy back to introduce her to Ted (the ECMO machine), Fred (the IV pole with numerous pumps) and most importantly, his new baby sister Bella. Words cannot describe the emotions running through your body when you are introducing your son to his baby sister knowing that this is the first and last time he will ever see her. It absolutely kills me.
They took her off the ECMO machine and wired her sternum and chest back together. They were able to stabilize her and we finally got to hold her. We had been waiting for this for 8 days. This wasn’t supposed to be the way it happened, but it felt so good to finally get our hands on her. She was such a FIGHTER! She gave it everything she had until there was nothing left. She never made us make any tough decisions on our own. She always made them for us. She was courageous, determined, resilient, and perfect. We were blessed to spend 8 days with an angel!
At 7:45 PM tonight, Isabella Lauren Bobay passed away peacefully in our arms. She finally found her wings. For everyone that has read this blog and sent prayers along the way, know that you now have a guardian angel watching over you from this day forward. There is no doubt in my mind that our little Isabella went straight to heaven. Bella, thank you for the greatest 8 days of our lives! We will never forget you!
God Bless & Forever Believe in Bella!
The Bobay Family
Our Next Chapter February 29th, 2016
It’s been a little over 6 months since our little Isabella passed away. Words can’t describe how much we miss her. We think about her every single day. My wife and I are often asked how we are doing. I think the best way to describe it is that we lost our smiles for a little bit and there is an emptiness inside us that will always be there, but we wouldn’t have it any other way. She will always be a part of our lives. We often think about all of the little milestones she would be achieving, how big she would be, what she would look like, etc. I never in a million years would have thought that I’d miss the sound of a crying baby at night, but I do. Those tiny little inconveniences that you experience as a parent of a newborn now seem so much more precious. This is coming from a guy that once described to a friend that our little Tommy sounded like a tornado ripping through our house in the middle of the night. Isabella has put everything into a little clearer perspective for us.
As you probably saw, I posted a few pictures. If you don’t already know, we come from a family of traditions. We chose to start a new tradition this year by dropping off a few gifts to Isabella Christmas morning. It turns out we weren’t the only ones that had visited her. Thanks Big Sis for remembering our little girl! You also probably noticed the other picture. Tommy understands for the most part what happened. He has taken it like an absolute champ. He understands Isabella will forever be a part of our family and embraces the fact that he has a very special guardian angel watching over him.
Tori, on the other hand, is quite clueless which is probably a good thing because she has given us a number of laughs when we really needed it the most. How do you explain to a 2-year old about her little sister that isn’t around anymore? The answer is that you don’t. Not yet at least. This is one of those things that really bothered me after we lost Isabella. I envisioned Tori and Isabella being best
friends similar to the way Laura is with her sister Colleen. Tori will never have that relationship now, but it is important for me to tell her in the right way.
I decided to start writing and what I ultimately ended up doing was writing a short children’s book. In the book, Tommy explains to Tori about his guardian angel. The book allowed me to write the message that I wanted Tori to hear about her sister. In a way, I felt like I was writing the message that I needed to hear as well. Unfortunately grieving isn’t exactly a simple process that you can google and come up with an answer on how to do it. You ultimately need to find your own way that works for you. Writing this book was my way of doing this and it allowed for my mind to slowly gain acceptance to the fact that she was gone.
Things happen in life. You don’t always know why and you could spend your entire life trying to figure it out. Laura and I have decided to try and pay it forward to other families that are going through what we went through. If you are reading this, you have found your way to the www.heavenlyheartsfoundation.org website. We are excited to say that today we went live with our website with the mission to provide support to families battling congenital heart defects in children’s hospitals throughout the United States.
Many of the families we are likely to run into will have much happier endings than ours. We will absolutely cherish those stories. There will also be a very low percentage of families that have to deal with an experience similar to Isabella’s. We can help them too. Regardless of the situation, we are 100% certain that we can make an impact on the congenital heart defect community in memory of Isabella.
This is our next chapter. We hope that you will join us in our fight to help these families through their journey. A simple smile can go a long way!
P.S. Don’t forget to buy the book. All proceeds go directly to the foundation!
God Bless and Believe in Bella!
Jason
