3 week stay

The next three weeks were very hard on me. I didn't feel prepared like I had for his first hospital stay, after all I had 17 weeks to mentally prep for it. This time it caught me off guard.

 I knew he was breathing loudly and with a little more effort than normal, but he didn't seem in distress. I was looking for answers as to why he was so loud and didn't like the answer I got. Paralyzed vocal cords??? How and what caused it? They just kept telling me if it doesn't clear up, if he can't breath, if he was to get sick it would be devastating. Ok first off, let's not use that word when talking about my son and his possible outcome.

 Dr. Polavarapu was one doctor you could love to hate, he was brutally honest. While I respect honesty let's not jump to worst case scenario with such a hard blow to my mental and emotional capabilities. He did rounds and asked if the doctors had said anything, knowing they did, I said no. I wanted to play dumb and see if I would get a different story from Dr. P. He looked at me strangely and then moved on to another room. Within ten minutes he was back in the room and had closed the door behind him. Here was when my mental status changed  for the next week. He really was pushing the trach on us hard telling us it would be the best thing for Eli. I wasn't convinced, I wanted more testing, prove to me that my son needs one. When you tell me that this thing is going to be semi permanent and you won't re-evaluate his cords for a few YEARS, you want me to take this lightly and agree right away. I'm more stubborn than you can imagine and this doctor wasn't going to trick me into it. 

I am going to be honest and say this caused a major disagreement between Rafe and I. He wanted us to do whatever was the best for Eli and to just get it over with it if it needed to be done. I don't think he was understanding that the trach was a major life adjustment even more so than just Eli's cardiac issues. Besides that it would cause delays for Eli. I was scared that I would never hear him talk and he wouldn't ever be able to eat like a normal person. (When I met with the ENT he said both of those things would be possible just with a little more training than normal.) I wanted a second opinion and told many doctors and residents I was not agreeing to anything without further testing. If I wanted another ENT doctor to look at him I was more than welcome to transfer to another hospital (uh, excuse me?). Fine then I will demand his original doctor to do more testing. Dr. Marra wanted to do a broncoscopy  and was amazed to find out his cords were not paralyzed just irritated, possibly from the NG tube and acid reflux. He wanted the NG tube out asap and a stomach (G) tube put in. 

Four days later Eli went in for his second surgery in his short little life. He had his G tube placed and had a Nissin procedure done. The nissin is where they take a part of the stomach and wrap it around the bottom of the esophagus to prevent acid from going back up. The surgery went well and he was on the road to recovery. When he was wheeled back to his room from surgery there were about 10 people in his room getting him all situated. Two nurses were arguing with the anesthesiologist and were making me very nervous. The nurse was saying Eli was not responding to the light in his eyes and kept repeating that, even though the anesthesiologist said that was to be expected due to the drugs they had used to sedate him. Hearing your son is not responsive is scary! I immediately got sick to my stomach and had to walk out of the room.  A few minutes passed and they said everything was fine and he should be awake in about an hour. Deep breath and release, thank God! We were warned by the ENT that if the noise continued a tracheotomy was still possible in the future. I am happy to say the noise stopped, who knows why but it stopped! 

The next week was pretty uneventful. I'm not really sure why it took us another week to get released but it did. We have been home now for almost a month and things have been going wonderfully. Eli is slowly gaining weight. He is reaching his milestones though so that's important. He started smiling about a week and a half ago and is starting with the baby noises. Yesterday he completely came off of oxygen and his numbers are looking great. I am happy to say that Rafe realized my stubbornness paid off for once in my life. We avoided the trach because I demanded more testing and I stood my ground. I've learned I need to really stand up for Eli and be his voice. Doctors sometimes take advantage of people who don't stand up for their loved ones. I have even had a doctor or two admit that. Not advantage as in they are gonna do every test in the book to run up medical bills, but they just jump to the problem solver without finding the source of the problem. Trust me I love doctors and respect their work but sometimes it pays off to give them a run for their money. 

After the Norwood

Picking up where I left off the other day, Eli has now successfully completed the Norwood procedure.

 We were told the surgery would take anywhere from 8 to 10 hours, depending on how well Eli comes off of the heart lung machine and the bleeding is controlled. His surgery only ended up being 6 hours long and he was back in his room at 1:30p.m. He was now in a special unit called the PSHU (pediatric surgical heart unit). When we (Rafe, my mom and myself) had toured the PSHU previously it seemed a lot more intimidating, this time it seemed welcoming. The nurse told me it would be a few minutes to get Eli all settled in and then I could get in to see him, with many warnings that he had a lot of machinery and tubes attached. I quickly ran to the bathroom and when I got back to the waiting room, Dr. Ilbawi (the heart surgeon) was waiting in the hall to talk to me. I feared the worst, did something happen to go wrong that fast? Thankfully he just wanted to tell me personally  how wonderful Eli had done during surgery and assured me things were going as planned. I smiled and wanted to give that man the biggest hug I could give a person, after all he had just saved my son's life. How could I ever re-pay this man, this miracle worker?

A few minutes later I was allowed to go see Eli, despite everything attached to him, he looked great! The nurses explained everything to me, all of his medicines, his tubes, and the plans for care. Talk about some of the best nurses in the world!

The next morning I got a phone call that they were going to do a bedside procedure to close his breast bone. Typically they wait 3-4 days to do it to allow for swelling to go down but since Eli had little swelling they went ahead and did it the day after surgery.  When a bedside procedure is done, they lock down the whole unit (9 beds), no visitors in or out until everything is finished. Eli was the first procedure for the day and they had 4 that day so I didn't get in to see him until mid-afternoon. During the next few days in the PSHU the nurses and doctors just kept saying "he's following the rule book on recovery". He was their star patient and he was doing everything right.

 Every night when Rafe would get out of work we would head back up to see Eli and check in with the night nurse. We would see Dr. Ilbawi walking the halls every night checking in on his little patients and talking with the parents. It was so comforting to see, this is a doctor who really cares about his babies and was totally approachable if you had questions or concerns. He stopped in one night just to tell us our son is beautiful and such a trooper.

During this time we were staying at the Ronald McDonald house right across the street from the hospital. That place was a lifesaver, we could be with Eli any time of the day or night and only have to walk back home. It was also nice for me because I got to talk to other mommies and hear their stories. I will be honest  and say I was happy to have someone who could relate.

The day before he was discharged, I had a horrible breakdown. Reality set in that I was soon going to be in charge of my baby and have to make sure he is fed and medicated on a tight schedule. It was one doctor after another that day to go over discharge information and all of the do's and don'ts  for his care. Talk about information overload, I ended  up crying for about 30 minutes. One surgery assistant even had the nerve to tell me in a snotty tone, that "if I wasn't ready to be a mother, we can keep Eli longer".....really chicky, you better watch yourself! I also had to learn how to put in a NG tube, which hurt me more than Eli I think. I'm convinced this boy will hate me when he's older!

My list of do's and don'ts : Do make sure you wake up every 3 hours to feed him, Don't let him cry for more than 5 minutes, his heart can't handle it (easier said than done). Don't forget his 8 meds a day, two of them being twice a day. Don't pick him up from his armpits (it will hurt his chest). Don't put lotion, alcohol, or hydrogen peroxide on his scar.  Do take his blood oxygen saturation daily (annoying stupid machine). Don't let his oxygen tank run out. Don't pull his NG tube out. I'm sure there is more that I can't remember at the moment, I have a routine down already. And you understand why I was overwhelmed right?

I was so proud of my little man, he got discharged 12 days after having open heart surgery! It was wonderful having him home with us finally, he got to be ours! Two days later, the noise started. He had developed this loud breathing out of nowhere, he sometimes sounded like he was snoring and other times he sounded like a guinea pig. Whatever the noise was, it was constant. We told the doctor and he thought it had to do with how Eli was positioned. When Eli still had the noise at next weeks appointment Dr. Husayni got worried. Dr. Husayni is the pediatric cardiologist who is monitoring Eli until the second surgery. We meet with Dr. Husayni every friday for the "Norwood Clinic".

Tuesday July 12th I got a phone call from Dr. Husayni who wanted us to see an ENT (ear, nose and throat) doctor, Dr. Marra. We set up an appointment for that same day, and we were told Eli had paralyzed vocal chords. If this didn't clear up in a few weeks, we would have to do a tracheotomy. Let me tell you how frightening that thought was! It seemed so extreme for such a small baby (like heart surgery wasn't). The next morning Dr. Husayni's resident called to say Eli had to be re-admitted to the hospital for testing, they wanted to figure out what was going on with his chords.

So we waited until the hospital called us to say there was room ready. We then headed up to the hospital for what would be a whirlwind of a 3 week stay.....

First time for everything

Well my mom has been pressuring me to "journal" what goes on in my life involving Eli. I don't know how good I will be at this so I will give it a shot and see how it goes. I guess we'll start from the beginning.

Monday Feburary 7th., 2011. The day I had been looking forward to for about 4 weeks. We were on our way to finding out the sex of our baby. I scheduled the earliest possible appointment because I just knew I couldn't sit around all day waiting anxiously. I laid down on the table, convinced I was having a girl, not knowing the next few minutes would change my life forever.

 Within a few seconds of the ultrasound tech scanning my belly, I knew what I saw was little boy parts. I gasped and instantly freaked out (all fairly quietly) I was wrong! For some odd reason, I had been scared to have a boy but now having to embrace it. Ok fine, a boy it is. I could get used to it, after all I do have a brother and my husband has 4 brothers. The tech finishes up and gives us a bunch of fun pictures and tells us to wait for the doctor so he can do his own scan and talk to us. This is where our lives changed forever....

Doctor did his scan quietly, paying extra close attention to baby boys chest area. He said he believed the baby had some sort of heart deformity and wanted us to see a pediactric cardiologist ASAP. He warned us that often times babies with heart problems are also born with Down Syndrome or other types of problems. He must have mentioned DS about 4 times in a matter of minutes, adding even more panic to my already shocked brain. Oh man, what an overload this appointment was turning out to be, geez I only wanted to know the babies sex! Well they were so serious about seeing the ped. cardio. that they called and scheduled the appointment before I even left the ultrasound room. I was to be there the next day at noon. We were sent on our way to share the good news that we were having a boy. I got home and Rafe went off to work, I must have sat in silence for about an hour just going through everything in my head. What would our lives turn out to be, where do we go from here, are we excited and sad all at the same time???

Noon the next day, Dr. Gulecyuz (gul-uch-es) confirms baby boy has a heart problem. At this time he couldn't pinpoint it because baby was moving so much. He said it was a possibilty of a few different things, coarctation of the aorta, hypoplastic left heart syndrome (HLHS), ventricular septal defect (VSD). He drew my mom and I wonderful pictures and left us with a good outlook. He is a wonderful doctor and helped ease our minds and hearts. He would continue to monitor the baby every 2 to 4 weeks in hopes that the left ventrical would catch up to the right.

Tuesday June 7, 2011... My 3rd wedding anniversary and a busy day with doctors appointments. My mom and I started the morning out with my last appointment with Dr.G since he would be out of town until the day after my expected due date of June 27th. He confirmed that the left side had not caught up with the right side but at least had continued to keep up at half the size. We were already aware that baby would be having heart surgery after birth, we just weren't sure which one. Dr. Ilbawi the heart surgeon's team would be making that decision after baby is born. Before I left Dr. G's office he told me he was convinced I would go into labor while he was gone on a vacation and he really wanted me to be late on delivering. I told him not to jinx me because I wanted him to be part of the decision making on babies surgery.

Thursday June 9, 2011... Rafe had just left for work when I suddenly had to the urge to go pee, except when I stood up I realized that urge was not from my bladder. I would have to say that was one of the scariest moments of my life. Sorry for the horrible details coming but blood was dripping down my leg, had soaked my underwear and was all over the floor. I was sure I had miscarried and was heart broken as I am crying hysterically while sitting on the toilet watching the water turn red. I had to stop and control my crying so I could scream for my brother to help me, he thankfully fell asleep in the living room so was able to hear me. I then realized I felt the baby move and got a quick sense of relief, baby was still alive. I called Rafe really fast and told him head straight for the hospital, my mom and I would be there shortly. I then called my mom hysterically crying and told her to get to my house fast, I was bleeding. I then called my ob/gyn who I had forgotten was also out of town then. Fantastic!!! I finally got through to his back-up who would meet us at Hinsdale Hospital. David was there to keep me calm, thank god for that. We got to the hospital within 30 minutes, during rush hour traffic and a horrible thunderstorm. I then walked from the ER up to Labor and Delievery, uh why are you letting a pregnant woman walk after I tell them I am bleeding!
  A few tests and exams later, we find out my placenta has torn and baby needs to come out. They wanted to schedule it for 7pm, the ob said no way this baby has heart problems, he needs out now! I panicked again because I went from having a few hours to think about it to having about 10 minutes. I was surprisingly calm as they wheeled me down the hall to the operating room, I was sure things would go smoothly. The spinal was not pleasant but being numb was great, then I hear "incision is made". Uh where is my husband??? Did they forget I was married and wanted him in there? Thankfully he was in there within a minute and our beautiful son Eli Randall was born two minutes later at 4:19pm. He let out a wonderfully loud cry and I was in tears, happy tears of course. The baby I had always dreamed about was finally here and he was all mine, and god was he gorgeous. A quick kiss and he was off to the NICU to be put on oxygen and have his echocardiogram done.

The next few hours were a blur as I was high as a kite on morphine. All I know my face itched like crazy and my family was standing around me laughing at me. We got word that Eli would need to transported that night to Hope Childrens Hospital, about 25 minutes away from the hospital I would have to be at for the next few days as I recovered. The cardiologist (someone I had never met) also broke the news that Eli did in fact have hypo-plastic left heart syndrome (HLHS) and would need to have the norwood procedure done within a week of birth. My heart sunk, but I was willing to do whatever it took to save my son. An hour later I had to say goodbye to Eli for a few days until I got out of the hospital, the longest 3 days of my life. I cried myself to sleep every night because I so desperately wanted to be there for and with my little guy.

I finally got to him on Sunday the 12th. I was so happy to see him and yet scared to walk into his room at the same time. No one wants to see their loved one all hooked up to monitors and sedated, and this was my little baby. I kissed him everywhere I could reach, he was in this plastic square box/bed. He couldn't be moved since he was on the ventilator and they didn't want to hurt his throat. I spent hours just starring at him and loved every minute of it. I would continue to do this everyday until surgery day. I got to hold him for the first time on that Wednesday, I couldn't move him much but I at least got to feel him in my arms and against my body. It was great and would have to do for the time being. We also did a bedside baptism before his surgery to, the same priest who had married Rafe and I three years earlier agreed to come out and do that for Eli.

Thursday June 16th....The big day! Eli's surgery was scheduled for 7:30am. Rafe and I arrived at the hospital around 5am to spend as much time as possible with him before then. I probably cried for those two hours straight just worrying about all of the possibilities. Around 7:15 all of the sudden the room was filled with nurses, transport people, doctors , etc. The fear was setting in and I couldn't stop the tears from flowing. I held onto his hand until he was wheeled out of his room and followed very closely behind them as he was wheeled down the hall. They stopped and let Rafe and I kiss him before he was taken into surgery, talk about gut wrenching. We were told we would get updates every hour and a half to two hours, and they were very good about staying true to that. Every update was wonderful and eased us a little bit more. I was happy to have both of my parents there to comfort me, I must admit I was pretty horrible that day. I felt like I was the only one in the world going through such a horrible thing and no one understood. No one would get it as I sat there in tears, who is this girl and why is she so sad?  When we got the all clear, my world brightened up and the adrenaline wore off. My little Eli made it through the surgery wonderfully, my mind could now relax for the moment.

To be continued....(Eli is crying)