February 24
Ok so here is the run down. it started on february 11 when I went to Dr. Ludomirsky for a routine follow up weight check. Brady was out of town and so i had to go alone. (aka, already emotional because i was alone). As soon as I got there, we did a weight check which was very disappointing. A teensie 8.8. Just 3 days prior at Dr Sasala, you had weighed 9.1. It was very disappointing and I felt responsible. After the weight check, unbenounced to me, they also needed to do a Echocardiogram. Dr. Ludomirsky, instinctively knowing how I felt, immediately gave me a hug and kiss on the cheek and then looked at Theo and said, "oh those skinny legs, we will get you some fat on those". He has a presence around him that is a bishop/dad like. Just brings tears to your eyes if they are close! Well, they were close so I had them. We then went into have the Echo which took about 1.5 hours. Sweet baby was so exhausted and scrawny that you didn't even cry. You were a little fidgety, just enough for me to feel bad for you. Then they had to draw blood to check your potassium level and digoxin level. It was a fail. 2 people were unable to get it, so then they called in the big gun nurses. Swaddled your tiny body and you screamed like a new baby. It was all I could do to not scream too. They finally got it after 4 tries!
When it was time to meet with Dr. Ludomirsky, I told myself not to cry. I believe that your credibility as a mother highly decreases when you cry. Period. And Today was the day that my credibility was in the negative. We all stared at you in a pathetic "poor baby" kind of a way. It seemed to last an hour. All i wanted to do was to shield you from the glaring eyes. Even though I knew that it was because of your heart defect, I still felt responsible. They talked about how we should just do the surgery now instead of wait. No need in waiting since you looked pretty sickly. I would follow up with my pediatrician on monday to see if you were gaining weight and then meet with the surgeon soon. The NP Diane is very nice as well as is Akeela. They have been in with all the appointments. Like his sidekicks. Like I said, i try my darnest not to show too much emotion because who likes to be that person...well, as soon as Dr. Ludomirsky left the room, they both looked at me and I couldnt help it. I lost it. Like the kind when you sweat and just look ugly because you can't control it. That is the cry i had. As i held my poor sick hearted child, I just sobbed. Sobbed out of helplessness and guilt. They both gave me a hug and Diane reassured me that it was ok and to just increase the feedings again from every 4 hours to every 2 or 3. She said I didn't need to start formula yet. Not until I saw my pediatrician on monday. I tried to fake stop crying so they would just leave and they finally did. After they left and I was nursing theo, Dr. Ludomirsky knocked on the door and peeked around the curtain. He said, "Are we okay? I don't want you leaving feeling bad or feeling sad. You are doing a great job and we all knew he needed the surgery anyway. His heart has had enough. Please, you are doing great. " Oh how sweet.
That weekend, Courtney and Christian came and stayed because brady was gone and let me tell you there were a lot of tears that weekend. My tears of course. Poor christian thinks i'm a loony. Which I am. Fair enough.
Monday, february 22 finally arrived. I dread every appt in fear of them telling me you are not gaining enough weight and why?? However, after feeing you every 2/3 hours day and night I was trying to be positive. I undressed you, placed you on the scale and my heart sunk when I saw the place markers stop at 9 pounds 1 ounce. I could feel my face heating up. I asked the MA if we could try again after I fed you. He said sure. So I fed you...and of course you were zonked out and I just couldn't stuff enough in you! But still, I thought for sure the scale was wrong. The MA calibrated the scale and placed you on again. Once again, the place markers steadied on 9 pounds 2 ounces. Wawa. Pathetic. The NP Courtney was the one to see me. At first she wasn't phased. Treated us like normal laughing and having good conversation. Then she looked at his chart and saw that almost 3 weeks ago you weighed just 2 ounces less. I could see panic in her face. Panic I know because i have felt it. Like when you know something is wrong but don't want to show it on your face until you confirm with your superior. She told me to hold on and left the room. Came back in about 30 min later and asked if we had changed our cardiologist because Dr. Presti said we had. I told her we had changed and his name was Dr. Ludomirsky. She left once again and came back about 45 min later saying that she was still waiting to hear back from them and to just wait here. Its like we were on probation and couldn't leave. We waited and waited until she finally came back in 1 hour later and said, "Man they are so nice and they love the Cliffords! They want you to meet with the surgeon on wed to schedule surgery for theo. They think it is time. And also, start him on formula with the bottle. I asked her about mixing it with my breastmilk and she did a little browsing and came back to me with an enhanced container of formula and instructions. Finally we could go. The next 2 days were filled with me doing nothing except nursing/syringing a bottle down you. Partly miserable.
We had an appt with dr. Ludomirksy that following wednesday and then following that appt, one with dr. Ralph Mosca, the cardiothoracic surgeon. This time brady was with me, and I had resigned myself that you were going to have surgery. That way, my nerves and emotions were so great. Also, I KNEW that we weren't going to have blood work and we weren't going to have to endure another 1 hour echocardiogram. When I placed you on the scale, I held my breath for how much you weighed. And I was pleasantly surprised when I saw a 9.3 pounds. ha! I mean, technically you should gain anywhere from 0.5 ounces per day to 2 ounces per day. So really it was not great. It was reassuring in that you were gaining, and at the same time, also reassuring that although I couldn't see the hole in your heart, it was there and surgery was needed. We discussed any last min questions with Dr. Ludomirsky and then headed off down the street to meet Dr. Mosca.
His office is in the NYU hospital. We got there and didn't have to wait long until he invited us into his office. He was different than I imagined. Before we left Dr. Ludomirsky's office, Akeela and Diane both confirmed that if their children were having open heart surgery they would only trust their children with Dr. Mosca. That is so comforting to hear because every time i thought of it, I got queasy and wanted to throw up. After all that we had heard, I expected dr mosca to be some older balding man who didn't speak english that great, when in fact he was younger than I thought. He was Italian and tan and spoke english perfectly! He greeted us with a hand shake and then went and sat behind his desk, pulled out a binder filled with Congenital Heart Defects and started to explain. He quickly flipped to the VSD page and started to rip through the flow of blood through a heart with a VSD. He didn't skip a beat and didn't skip a step. About 3 min later, after him rambling on about the flow of blood and how it was destructive to your little self, he said, "So what do you think? The other option is....well, he can't live with a failing heart so this is your only other option." Ok. we had no argument to that. We were speechless. "Well take it." we said cautiously. He quickly said, "great, and shut the binder like we just made a business deal and continued to go on about how he repairs these defects using Gortex. The same material used in waterproof jackets and boots. Brady asked a question about if he would need another surgery. Dr Mosca began to answer and continued to talk about how "if only 90% of the hole was closed, the heart would still function perfectly and the blood flow would be normal..." then he stopped mid sentence and said in his New York accent as he looked up at us with a chuckle, "now don't worry, i'm shooting for more than 90%. I'm shooting for 100%". Oh the humor of a cardiothoracic surgeon. "I was just telling you that if for some reason there was a little residual. Which there is not going to be." He then went on to tell us about the risks and benefits. Ending all of the risks with, "less than 1%...also less than 1%" he was so reassuring that this was the best and really our ONLY option. After we asked him our questions he said, "man, lest see, what were we going to do....let uh..oh too many surgery...lets go get this thing scheduled. Its not me its all on amie, she does it all, She is the brains of it all." So funny. He then walked around the desk and listened to your heart quickly and said, "just as I would expect it to sound". Then he quickly walked us to the appt counter where we waited for him to come back to tell us either date that would work. Either the following tuesday, march 1, or march 8. We asked him which would be better for theo. He looked at us dumbly and said, "well it doesn't matter....i mean, if you wait a week he will just live like this another week" and pointed to you, slumped over in brady's arms asleep and breathing 60-70 breaths per min. "Well, him breathing is like trying to eat a pizza while running a marathon, have your ever tried that? he's exhausted." (his new york accent).
We both looked at each other and knew that meant we should do it sooner than later. So although brady was going to be gone on his one very important meeting of the whole year, we decided to do it the week before he left. My mom was going to come so everything was going to be fine....so we thought.
That Friday, Jude watched probably 3 movies in a row while you slept on my chest on the couch. I just couldn't put you down. I was so anxious. I really could not even fathom my tiny baby having open heart surgery. When I would go running in the morning, and the thought would cross my mind, I would become dizzy and nauseous. It was awful. So I tried not to think about it. (yeah right, that is all that was on my mind). And its a good thing because on saturday morning, when I woke up, I was doing the same run through I had done a trillion times in my head-- when it dawned on me that it was so silly for you to have your surgery when brady would be gone! My mom wasn't coming to "replace" brady, she was coming to "add" more hands. Therefore if she came and then Brady left, I would be stuck at the hospital all alone day in and day out. They told us to expect approx 7-14 days. Talk about freak out. I frantically discussed it with brady and we both decided that we were crazy to even think that it was a good idea to do it before he left. I called everyone i knew and of course, it was saturday and they were closed. But i did leave a message with the on call person @ Dr. Mosca's. I then called my dad who was plnning on coming that day and told him our scenario . He decided to change his flight as did Brady and my mom. Now Brady was going to leave on tuesday to go to the Houseware's show instead of Friday, and my mom wasn't going to come on monday anymore, she was going to come with my dad on thursday or friday morning.
Monday morning came and I called the office at 7:59. I was calling to cancel an open heart surgery with less than 24 hours notice! Who does that and what would the fine be? I mean, when one cancels a cleaning lady she sometimes charges $50. And I called to cancel open heart surgery? Lucky for me, she said it was fine and we rescheduled for the next week. hopefully free of cancellation fee charge? It was now scheduled for March 8. When I hung up it was like a huge weight was lifted. I could breathe. Kind of. It really just pushed back the anxiety. At least I had more time with you...one more week.
Those last few days before my mom got here were priceless and it was like i was in a daze. We did nothing. Jude was so sweet as I just sat there holding our tiny theo. My parents ended up coming on friday morning which was perfect. It was so great to have them.
On monday morning, my dad was able to watch Jude so my mom could come with me to the pre-op appt. They went so much better than any other appt. We first went to Dr. Ludomirsky's office for blood draw. They didn't even bother weighing you which made me so happy. And they were able to get your blood on the first try! Akeela is our nurse and she is great. Of course, right before she left, as she was explaining the pre-op things I lost it. And then my mom lost it. And there we sat, holding you and sobbing. Akeela has seen me more times sobbing than not.
After the blood draw at the office, we needed to go to Dr. Mosca's office for a pre-op check up and to sign the consent. It just sounds awful. The thought of cutting your chest open when visibly, your heart was not broken. We walked over to NYU and arrived in his office. Beth, one of his NP's, was the one to do your check-up. She was maybe the most somber of the staff we had come in contact with thus far. Very unfuzzy. I asked her if I could feed him before they weighed him. She reluctantly said I could and left for about 3 min. Then she put you on the scale and your weight was 4.3 kg. I smiled and said, "wow he is getting bigger". She commented as she lifted you off, "well, either that or else he just hasn't peed yet". Wow. Aren't you a peach. She listened to his failing heart and said, "yes, just what I would imagine". She was not warm. Then as she read the consent and discussed all the risks she just stared. Like she was a brick wall with no way to get around her. She explained how there was a 5-9% chance of death, strokes, yada yada. She said all of this as if i wasn't holding my little angel. It was hard to sign the papers. I knew you needed it but still in the back of my head, I was wondering how in the world was I ever going to be able to hand you over and then walk away.
Next we went to a different floor to get a chest x-ray. Of course it was a wait, and then after the x-ray was a wait, and then we had to wait to make sure it was fine. Before the x-ray, I placed you on the table and you didn't move or make a sound, you just stared--normal for you. The technician said, "Man, he is looking straight into my soul, is he always like this? Its kind of creepy". ha ha. we finally got the go ahead and left.
We took a Via home and had Thai food that night for dinner. Brady came home, my dad and brady gave you a blessing. It was so sweet. I was so sick to my stomach that I asked my mom to do your pre-surgical wipes. Followed by millions of pictures of your sweet little chest. That night, I slept with you on me. I was allowed to nurse you until 2am. Then you had to be NPO. We had to be there at 6 am. and although it was only a few hours, it felt like days waiting for 5 am to come. I couldnt sleep, just laid there with you on my chest, savoring how it felt. However 5 am did come. Brady and I got up, showered, dressed in silence. My mom wiped down your body again with the wipes and we left. It was a little of a panic feeling. NO a lot like a panicky feeling. The next couple of hours/days was so unknown. This was the first of my hurdles. Leaving the house. I did it.
We took a via again, and sat in silence. We got to the hospital, brady checked us in and I held you, rocking you as if you were crying although you weren't because you didn't. You were calmly sleeping in your little patagonia suit. I paced nervously in the waiting room clutching onto you as tight as I could. My mind raced as i watched a variety of people walk into the surgical waiting rom. It was such an interesting time. All the people walking in and sitting waiting, were waiting for surgery. Surgery for some reason that couldn't wait one more day. It had to be done on this, march 8 at 6 am. They were all trusting their various surgeons and the anonymous staff that they would wake up later that day and be healed, or cured, or improved, or healthy again. It was intriguing to notice their looks and the almost serene feeling.
They called our name too soon. I wasn't ready. I hesitantly walked through the double doors and into a room with a glass door, still clutching onto you as tight as I possibly could. And continued to bounce and rock you as if your still spirit was as anxious as mine was. It wasn't. You were sleeping so peacefully in my arms. So calm. There was a rocking chair and unable to talk ALREADY, brady answered most of the questions and I headed . She told us that when it was time, the anesthesiologist would come in and carry to you out. And that would be it. As she said that, I squeezed you that much tighter. Then, we would be guided to the waiting area on the 15th floor to wait.
I started to sweat and my heart started to race and I was so nauseous. Dr Mosca came in once again, not saying much, asked if we had any questions and then left. Next Dr. Nye came in. She was the anesthesiologist. Nice and asian and sweet. She explained things in a very soft voice and told us she would be back to get you. Typing this, I think I am more anxious than I was at that time when dr nye came in. I knew that people had been praying for you AND me. And my prayer was that I would not freak out and that I would be able to let you go. And this is the time when I felt the prayers the most. Dr Nye left and we changed you into a little gown, talked to you softly as if nothing new was happening and then before we knew it she was back. She told us to give you one more kiss. I tried to make the kiss last an eternity. I wanted to super glue you to my arms. This was the moment I had been dreading. Handing my sweet baby over to complete strangers for open heart surgery! The moment I was fearing and thought I couldn't do happened so quickly. She had a cradle made of a warm hospital blanket that I carefully placed you in. Your eyes staring up at her so lovingly and her looking down at you so kindly. By her presence and the way she held you and smiled i was somewhat comforted. And by the something else...the Spirit. It was weird. I WILL NEVER do that again and that was the hardest moment thus far in my 29 year old life. I don't wish that moment upon anyone. We watched her walk through the double doors with staff following and brady and i wept. It was over. I did it. I somehow, mustered enough bravery and maturity to hand you over. It sounds so funny and so silly, after all it wasn't me going to get open heart surgery. But still, I don't know how I did it. It was truly a miracle. I think about it and I could throw up. I will not nor could never do it again but I did it once and hopefully that was enough. My prayers, and others were answered at that moment on my behalf.
A nice lady led us up to the waiting room on the 15th floor, CCVU (Congenital Cardiovascular Unit). The waiting room was empty. It was more like a foyer. It overlooked the East river. The suns was just rising. We were facing the east so we were right there with it. They gave us a phone and said that when they were closing up they would call us, and then we could expect Dr. Mosca about 20 min later. And then when they would bring you up they would call us again.
Brady worked and I stared. Wanting to hurl in the garbage can next to me, wanting to jump out the window into the river, wanting to run down to the 4th floor to get my baby, and wanting to just sleep. I slept on and off. At about noon we got a call that they were just finishing. Anxiously waiting, left alone in the foyer from staff and other family members coming and going, Dr. Mosca finally appeared. "It looks like you made yourself at home". We sat up a little straighter, nervously hanging on every word he said. We couldn't speak. I think we did a nervous laugh. He looked out the window into the river which what seemed like WAY too long and then said as he sat down on the heaters, "so it went well. The holes were much larger than we had expected but was able to get them closed nicely. He was in severe heart failure but should be good now....any questions?" We had no words. Nothing. We were speechless. Overjoyed that it went well, anxious for the next steps, shocked by how nonchalant he was and just awed. We somehow muttered, "oh...good. Great. yes thats great, no. no questions thanks". he started to get up to leave and good thing brady picked up his tongue off the floor. He asked him about the surgery and some other things. Dr. Mosca sat back down and answered his questions. I felt like someone just punched me in the gut so i don't remember hardly anything he said, other than, it was good. He did also say that from the heart perspective, it was a good thing we had scheduled the surgery for now because he was in heart failure. And that everything from the heart perspective looked good. "Now, we will hope he doesn't get pneumonia or have any other problems while he is here but his heart will be good." He got up to leave and as he floated out of the foyer, we said again, "thank you." He raised a hand saying, "no problem". hardly looking at us. No no no, that was not enough. Just a simple, casual thank you!? He just gave us a son! He just SAVED our baby! He just opened up your heart, handled your tiny heart with his gentle hands, patched the holes and all we say is thank you. It is a weird and strange concept. I knew he needed more but i didn't know what else to do. I wanted to chop off my left arm and give it to him as a sacrifice, or be his maid for 10 years or grovel at his feet or SOMETHING great and grand to show my true appreciation. But all i could come up with was another, "No no, really- thank you very very much." I think he kind of could hear it in my voice. He slowed, almost stopping, turned around the said, "you are very welcome". Then he continued to float away. Really, I think he floated into and out of the foyer. He was an angel. A thank you and a your welcome. OPEN HEART SURGERY!! thats HUGE!!!! He was so calm and unassuming and confident and just amazing! I can't stop thinking about him and all the lives he has touched. And how he floated into our lives and floated into the waiting room. All of the years he studied, and look what he gets to do every day. Literally, save lives. Baby lives.
I dont think i will ever be able to comprehend all he does or how grateful i am. And we are just ONE family that he has helped/served/worked for. Or, as he put it when we asked him if he knew the Mattoni's, who had also talked highly of him, "oh good, another satisfied customer". I mean, I get why surgeons are cocky. They deserve it. Especially him. He is an angel.
I could go on for another good 30 min about how incredible i think he is....and really i don't even know him. Like at all. Someone else said to us in the hospital, "oh Dr. Mosca, he is the best. And a man of little words." Each day we were there, he would make rounds. He would walk into our room, say, "how is my little buddy?" Look at the monitor, pat his foot or pet his head, "good, ok.." and then float into the next baby's room. Just unbelievable. As they were giving me my discharge instructions, they said, "so you know when all of your follow-up appts are?" me: "yes yes but when do i see dr. mosca?" The NP, "oh you don't." me: "wait....(swallow) why? Never?" her: "nope, you never have to see him again." I lost it. I audibly made a gasping noise followed by a noisy cry. How in the world was I to never see the person who was so influential in my life again?? wasn't he just as attached to me as i was to him? Ok its a good thing i guess. That might be kind of creepy if he knew just how obsessed I was with him.
Over the next few days, he was all I could think about. I was so overwhelmed by his carreer choice and his effect on me that I had no other choice that to write him my feelings. Lucky him, a gushy thank you letter 2 full pages long. ha!
