Updated 03-17-08
Well.....here we are the eve before the eve of Anthony's operation, and it's all about packing. Packing for a full day at the hospital tomorrow (Tuesday). Tests, retests, RSV shots, a blood draw and an xray. That's a big day for such a little guy. Then it's back home to pack again for the next five days to be spent between the hospital and Clare's place (Angela's friend in the city). We're told that one parent can stay with the child over night, but I'll be damned if that's a rule I'm willing to live buy. So, we're packing the exercise mat. We're also packing Anthony's toys and stuff so the place will be more familiar to him when he wakes up. ............Everyone has been so great and supportive. People at my work have been great. My boss even baked us some chicken/rice casserole and Mexican lasagna (enough for about 7 or 8 people). Cousin Holly pitched in with a Mommy/Daddy care package full of food, fun books and a really nice blanket for Anthony. We'll be taking what we can to the hospital and doing the best we can to recreate Anthony's surroundings for him. (yes....I will try to bring one of the dragons....probably the red one.) .........Anthony is enjoying life in his new jumper that Mommy bought. It's got lights and sounds and things that spin and he can jump and control some of his movements. He really enjoys it. Other than that it's just been the three of just hanging out and waiting till the rough spots are over. Pretty soon we'll be able to get him out in public a lot more. I'm not sure how notification on Anthony's progress will be managed. For now we're just playin' it by ear. I got my blackberry and everyone's address on it. We'll get something out. For now....more pics.
Updated 03-18-08
Nothing hurts more than watching your own child go through pain.....of any sort. Today was that kind of day. Anthony's pre-op visit started at 9am on the dot. First came the normal stuff like: blood pressure, weight, and height. (a little low, 15lbs 6oz, 25.5 inches respectively) Then the fun began. His RSV shot was given first, which always hurts. This time around he got one quick one. The 'complaining' lasted about three or four minutes until Mommy made it all better with hugs and feedings. Then we moved to the echocardiogram, which started a little wiggley, and quickly became nap-time. Anthony had to be woken up early for this day, so he took the opportunity to nap-out. The echo test lasted a good hour. Then we moved on to the EKG. The nurse stuck about 15 cold little stickers all over his body (not very liked). The test itself lasted about 2 minutes, then Anthony had to endure all those stickers being ripped off. ....a few hugs and cuddles later and all was well. Next came the real scary stuff. We went down to the blood draw room and waited in line. Anthony heard the baby ahead of him crying and it freaked him out, so he started crying a bit. When it was his turn it was ALL crying and screaming. Daddy did his best to keep Anthony still, but he REALLY doesn't like his blood drawn. It took Grandpa's sillyness, Daddy's hugs and Mommy's cuddles to make-it-all-better. .....Then came the weird part. Have you ever seen a 4 month old get chest x-rays? Here's the process: Daddy lowers Baby onto a baby-sized bicycle seat attached to a large pizza platter with holes for his legs. Then Daddy has to hold Baby's arms straight up over his head while the nurse encases Baby in a clear plastic PVC pipe. (think pipe cut lengthwise then bolted around him to keep him from moving his head or moving his arms. Only his hands and top of his head stuck out from the top and his face had a hole for breathing. Then the entire apparatus was pushed so Baby's nose was up against the target wall. He had to stay that way screaming bloody murder for a full ten minutes. (sorry, daddy didn't have the camera with him.) It really was hard to watch. We even had to redo the entire setup, because the nurse needed to raise him a little higher for a better x-ray. When it was over Anthony stuck to Daddy like Velcro and was eerily quiet. We went out to the waiting room and calmed down by looking at the city view. ......After all of that was a hour long visit with the surgeon and his team. We got more education and instruction on what tomorrow, Wednesday, will be like. Anthony was such a brave and courageous trooper through all of this. Medical personnel commented during the day on his good temperament and tolerance throughout all of this as well as his good looks. .....Anthony's surgery is scheduled for 8:15am PST on Wednesday. The operation will last from 4 to 6 hours with about 2-3 hours being the actual chest open part. Daddy has asked for the operation to be recorded. The surgeon says it's possible. We'll see if they oblige us. Daddy and Mommy are allowed to stay with Anthony 24/7, but the sleeping arrangements are tight. We will have the ability to sign up for sleeping rooms, so we'll see how it goes. We also may stay with Claire, Angela's girlfriend, who lives 5 minutes away when we need more comfortable sleep. ......Anthony, Mommy and Daddy are all hanging out at home tonight just playing and having fun while Anthony wears his monkey outfit. We'll post updates on his operation and any results as we have the opportunity, which won't be often. So please be patient. We'll post an update as soon as we can. Until tomorrow....until after the operation....here's some pics of the day.
Updated 03-19-08
Anthony's surgery was a huge success. We are so relieved that he is going to be ok now, but....he is in so...much...pain. We started the morning at 6am in the waiting room. There was a short consultation with the anesthesiologist and some other nurses, then Anthony was carried into the operating room with nothing but a worried look on his face and no sedative. (a little weird). 3 hours later we were told he's fine and recovering well. The rest of the day was watching his progress get better and better. I sound like I'm belittling the whole thing, but that really was the day's activities. The hard and long part of it all was watching his pain and hearing his gargled cries throughout the day. It really is draining as a parent to watch your happy child go through so much pain. We love the little guy so much. He is truly being a remarkable child by taking his open heart surgery with such strength. Most babies with his condition are much much worse off. We truly are blessed with a child with a strong character. ......The staff is wonderful and top notch looking out for Mommy and Daddy just as much as for Anthony. We're staying a few blocks from the hospital at friends of Angela's (Claire & Bill). We just made a call to the ICU and found out Anthony is still doing well at about 9pm. (BTW the staff thinks Anthony is a reall cuttie-pie.) We'll be meeting with Anthony's cardiologist in the morning. Here's some pics.....please don't think bad of us for sharing these photos. Anthony's family is all over the country and we would love to have them all here to be with us. This web site is just a small step towards sharing with everyone we know and love. Thank you for all your prayers and wishes.
Updated 03-20-08
As of 5pm: Well....here we are at day three and the prognosis is better than we could have expected. Anthony has been moved out of ICU after only 24 hours. He is now in the Transitional ICU for kids where it's a bit noisier and bustleier. The doctors think that he will have his drain tubes and other Borg style connections removed within the next 36 hours. Currently, we're told that Anthony could be discharged as early as Sunday and maybe Monday morning at the latest. He is doing remarkably well according to the doctors here and other doctors that have viewed his photos online. He's already had two full breast feedings, which has made Mommy feel a whole lot better about Anthony's condition. ........It's noisy as can be in here. I'm very surprised anyone can get any rest here without being drugged up. (oh....and Daddy has discovered the UCSF free wireless network, so updates can be done at the bedside. In just a few minutes we're going to set up the live video feed so Grandma B can see him from NY. Either Daddy or Mommy will be staying the night with Anthony. We also have a bed we signed up for in the UCSF Family Center. Right now Anthony is sleeping soundly next to me as I type. Quick comment on the staff: they are all cute, good looking and look like they came right off the General Hospital soup opera set. ....Now, time for a Mommy update: Daddy has been so good about keeping everyone in the loop. Truth be told, I have been too upset to write anything. Anticipating surgery was torture and I got minimal sleep for weeks. The day of surgery was the hardest day of my life. I would have preferred someone cut me open rather than know that my baby is being cut open. Rationally speaking, I knew all this was for Anthony's health. It is just that I never wanted him to be hurt or be uncomfortable. As silly as that sounds, that desire juxtaposed to what is going on, has made me extremely upset. With all the lost sleep I am trying to get more sleep while I can. I start working April 1st. This will be difficult as well, as I want to be with Anthony all the time. I know Joey will be wonderful with Anthony during April just like he has been amazing all through Anthony's life. The mommy bear hormone has definitely taken over. I am so relieved that Anthony is doing so well and hope this trend continues over the next 8 weeks and forward. Here's some photos from the day.
Updated 03-21-08
Anthony's fourth day of his ordeal is better than the previous, but it's still hard. Angela and I went to Claire's last night to get one more night of good sleep. When we woke in the morning and called to check on Anthony we found out he had not eaten all night long. So, we rushed over to get him to the breast. In the meantime the nurse had gotten him to feed just a little, so Mommy topped him off with some fresh booby-juice and cuddles. The problem is: he's starting to get more aware of his condition and pain, which makes everything including feeding very difficult. He's been getting morphine and Tylenol, but only minimally, so as not to slow his breathing too much. His cardiologist stopped by for a visit today and reiterated that Anthony is doing remarkably well. It's hard as a parent to see that opinion as Anthony screams in pain in between medications. (Those are the pictures you are NOT seeing.) But we keep getting reassurances from everyone that he is doing exceptionally well for only being two days out of surgery. We got ourselves one strong willed and healthy baby, thank god. Tonight we're planning one more night at Claire's and we'll see about tomorrow. Anthony may be discharged in the Sunday/Monday timeframe. He had some problems eating today, but that's because he hadn't pooped since the day before his surgery. One suppository later and he was poopin' all over the place. Needless to say his disposition was better and he starting eating, playing and laughing. Grandpa came over for a visit and Grandma & Grandpa B showed up on the video phone to say hi to Anthony from NY. Mommy and Daddy and holding up well. If it wasn't for Claire and Bill allowing us to use their place, then we wouldn't have gotten any sleep. Anthony looks for us when we're here and we stay with him as much as possible. We're a good team, us three. More pics.
Updated 03-22-08
Good day, ...and welcome...to day 5. Not much to add to the story. Anthony has done very well today. He smiled at everyone, ate well, and took his meds without too much complaining. His pre-surgery symptoms have disappeared. Mommy and Daddy are having fun holding him and playing with him. Anthony took a long nap today, so Mommy and Daddy got out and walked around the UCSF area. We found a nice cafe and had some cake, tea and cookies. Daddy even found a comic book store to peruse. It was a nice San Francisco style up-hill/up-hill stroll. (Daddy had a little too much to eat, so it all worked out.) We brought Anthony's car seat up to the room to give him other things to sit in. We've also talked to a physical therapist (yesterday) and found some new exercises for his neck to do when he's better. Anthony's drain tubes are nearing the point where they may be taken out soon. Today he surpassed the point where they could come out, but we have to wait till the doctor does his rounds on Sunday morning for the final say-so. We are hoping they take them out tomorrow. If they do, then the policy is that hospital discharge is within 24 hours of that event. The nurses here are really nice. They play with Anthony and he laughs for them. He's on four meds at a time, but he likes the morphine the most. :) .........more pics.
Updated 03-23-08
Happy Easter! It's Jesus Day! ...the day Jesus comes out of his cave, sees his shadow and we get another 4 years of an American presidential administration on a jihad that is packaged as "delivering freedom", but it's really about maintaining an out dated oil based economy for just a select few who have a short sited view of a world that has changing needs. ....But for us, Easter means something different. It means we spend a very long day in a hospital with germs floating everywhere, beeping sounds, uncomfortable chairs, bad food, .....and Anthony. ....Speaking of which: Anthony is doing fine. We spoke to the doctor this morning. Anthony has two drainage tubes. As of yesterday afternoon, one tube has reduced its flow enough to be taken out. The other is just barely over the line. Sssssoooooo, the surgeon made the call and wants Anthony to keep both tubes in for another 24 hours. Which means this: Anthony gets his tubes out "first thing in the morning", which (in hospital-speak) means "sometime tomorrow". The tail end of this conversation with all the doctors seems to suggest that if the tubes come out early enough in the morning, then he will be released later that evening. Our guess is that we will be out of here (if I may borrow hospital phraseology) "sometime on Tuesday". Anthony is on a lot of meds and will continue to be on them for probably another month or two after we leave here. It's all up to Anthony's healing strength, and time. .......Meanwhile, back in the crib.......Anthony is doing fine. Mommy and Daddy are getting more comfortable holding him with all those tubes and wires, and Anthony is enjoying us while he plays and laughs. We got him to giggle and laugh just a few minutes after we arrived this morning. The hospital volunteer group dropped by and delivered a basket of Easter goodies of toys and books for Anthony. Aunty Claire also had a little basket for Anthony prepared for us this morning. (Thank you to all.) Anthony is sleeping now (2:30pm) and will be up again in another hour, which gives Mommy time to nap and Daddy time to update Anthony's web site and keep the family's finances in order. At 4:30pm Aunty Claire and Grandpa 'A' showed up to say hi to the Little Guy. We had some fun and enjoyed a Hospital Holiday. ...So Happy Easter Everyone! We hope you're enjoying your day watching tv, getting fresh air, and/or eating some yummy food. Wish we could be joining you, but instead....more pics.
Updated 03-24-08
Remember day one? Remember all those tests, and pain, and crying? Well...we got to do all of that again today, but in just half the time. This time around we had the x-ray and echocardiogram technicians arguing who should go first, and tubes, wires and surgical tape to take off/out. So here's how those 4 hours went: ....We arrived this morning at 9am just in time to witness the very end of Anthony getting his drain tubes and pace-maker wires removed. We could hear his screams as we began to rush down the hall. No one expected the procedure to happen that early. Next came the chest x-ray. Anthony's a kicker and kept kicking the groin shield out of the way. After that little fight came the hour long echocardiogram where Daddy and Mommy took turns trying to hold Anthony still as he kicked and carried on in a full fledged fidget. Afterwards came a cadre of medications that he has hated since day one. This followed by a bunch of Mommy/Daddy and many doctor consultations with instructions, questions and guidelines. From here we smoothly transitioned to Anthony getting another RSV shot. His transfusions during surgery had diluted the shot he got the day before his surgery, so he needed to be topped-off. Of course, getting the shot pissed him off. From here we went to the EKG test, which because of Mr. Super-Fidget took longer than was needed. Then more talks with doctors. Then Daddy got to bring the first load down to the car. I parked in front of the hospital, and called up for Anthony, who got a wagon ride down to the car. ...It felt so friggin' good to be headin' home. ....Anthony fell asleep in the car, as expected, while Mommy and Daddy took turns running into stores for Anthony's meds and some food. ...When we got home Anthony was all smiles. We carried him around the house showing him that he was now home and out of that nightmare place. He fed a little, had his afternoon meds, then went down for a two hour nap. Mommy and Daddy used that time to get the house back to normal. When Anthony woke up he was a bit in a daze. We think he still expects people to be poking and prodding at him. He made a call to Grandma & Grandpa B in NY and is now getting back to his routine. ...We have instructions on how to lift and hold him, but the main restriction is "never lift him by the mid section under his arms," which is the primary way most people pick up a baby. It's a conscious effort to not lift him that way. It also means that play time is a bit different. It will be this way for two months and then he will be back to regular baby activities. It's going to be an adjustment for everyone. ...Anthony says thank you to everyone for sending the cards and toys n stuff. He especially liked the rabbits from Aunty Erika and his Grand Aunt Annette. ....We'll keep you all posted every few days from here on in. Until then...here's how today looked.
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