Friday, August 14, 2009

Vincentio's Story / The Meaning Of It All




So I'm back with the continuation of our story as promised. It's been so many days now since I've left off.

I'll try to make this novel of mine a bit more concise since I'm basically exhausted. There are a few aspects of life here on the farm that are unknown to most, simply because some family business just isn't fit for public consumption.

Mostly because I like you all, and I wouldn't subject anyone I really liked to it.

Ugh, needless to say, I'm tired.




So... where to begin?


When I left off we had just been told of V's "mass" at the base of his right lung.


The doctor arrived shortly after my brief and unpleasant exchange with the nurse to let us know that he really didn't know what it was. A CT scan was ordered for confirmation.


The CT showed that this "mass" was in fact, my son's intestines and liver inside his chest. It was filling most of the right thoracic space and collapsing his lung.


Theory is, that he had a Morgagni congenital diaphragmatic hernia at birth, but the defect didn't fully open until some time after his open heart surgery. From the stress of having such severe RSV.


It needed to be repaired ASAP, but after such a severe case of RSV, anesthesia is out of the question for at least six weeks. So we brought him home on a full 2 liters of O2 and more monitors than I care to remember.


It was like walking on eggshells. I don't think I slept much that month but we made it. During presurgery testing they also found a blockage in his duodenum that would have to be opened.


The day of surgery I was nervous of course, but I thought if we made it through open heart, we could get through this. I had no idea what we were in for.


After the procedure, all 3 surgeons involved took us into a side room and layed out a number of photos. They were pictures of Vincentio's insides. The defect in his diaphragm was huge. You could look up through the hole and visualize his heart and both lungs. The surgeons all commented that they had never seen a child with such a large diaphragmatic hernia live for so long that way.


They asked for permission to use V's surgery photos for medical research.


The recovery part was truly nightmarish. His scar extended from the middle of his chest (they reopened part of the open heart scar) down to his belly button.


In the short time it took to move him from recovery down to ICU he was crying in pain. He was given more morphine, but before report was finished to the ICU staff he was in pain again. His dose was increased. During that first night, his morphine was increased two more times and fentanyl was added as well.


His chest tube to reinflate his lung was really big and obviously uncomfortable, after four days it was decided that the tube could be removed. Not long after, his O2 sats began dropping rapidly. An x-ray showed a pneumothorax had occured and there was a fair amount of air surrounding the outside of his lung. If it wasn't addressed the lung would collapse again.


There was talk of reinserting the tube but one of the docs had heard of using high flow O2 to help the body reabsorb the air. We decided to try and he was placed on 10 liters by mask. This stayed on for a total of 14 hours.


Vincentio is an avid thumbsucker, so he was NOT a happy camper during the whole thing. To avoid another chest tube, I became "super entertaining keep your mind off your thumb and keep your mask on mommy" for a really long time. It worked though, after 14 hours my man's lung was good to go.


He was finally discharged home after 11 days. The first couple days home we uneventful, then on the third I noticed what appeared to be a string in the center part of his incision. I figured it was a leftover stitch that would dissolve.


Within a couple more days the area around the stitch looked to be opening. To my absolute horror, I realized his incision was opening and we were seeing the subcutaneous layer of sutures.
.... gasp....


Dr.P saw us pretty quick and when he used a scalpel to cut the stitch hanging out, he knicked the skin and a gush that looked something like guacamole came shooting out of the openeing. V had a pocket of infection under the skin that had caused it to open. Dr.P had to open the whole center of the incision to drain it then he packed it and sent us home.


We have to do what???


For nearly a month we had to clean this hugh hole in his belly and repack it twice a day. Finally, after several weeks it was closed enough to simply bandage over, then after six or so weeks it closed completely. To this day it's not an attractive scar, but it reminds me of just how strong he really is.


I know grown men who would be brought to their knees by that kind of pain on a daily basis.


During the repair Dr.P fixed the hole in his diaphragm, pulled his intestines out and replaced them side by side (Ladd procedure) to correct a malrotation from being in the chest for so long. He pulled his liver back into place as well and reinflated his right lung. The blockage in the duodenum couldn't be opened so a bypass was performed there.


That is what causes V's "stomach" issues to this day. He eventually required a Nissen Fundoplication for intractable vomiting and a G tube for "failure to thrive". Many heart babies have trouble putting on weight, but V's intestines were also traumatized and they don't seem to absorb nutrients as well now.


You all know the rest of tha G tube "drama" that has followed.


Since his GJ placement in July, he's gained several pounds and actually looks almost chunky for the first time in nearly four years! His skin looks good too, but due to some other factors Dr.P doesn't think his stoma site is viable anymore, so on August 24th we'll have a consult to schedule a revision.
That's Vincentio's story so far, far from over. It's not just a Down Syndrome thing. It's a Congenital Heart Disease thing, a Congenital Diaphragmatic Hernia thing, a G Tube thing, a "failure to thrive" but I'm Still A Survivor thing, and more than anything...
It's a story of how one little boys strength can bring an aching family together and make them whole again.
He's really something, so keep watching, keep reading, keep enjoying life with us. There's surely lots more exciting stuff to come!

Thursday, August 13, 2009

Newsflash!

To follow yesterday's post..

No leukemia for Miss Zoey. She is officially still in remission.

Damn God is good.

stay tuned....

Wednesday, August 12, 2009

Storming the Gates...

This is a bit of a sidetrack to my current "life story" expose of late, but it's a very important one. Those of you who have read my older posts know how I feel about childhood cancer.

(insert expletive)

One of our new friends is in need of some serious, hard core prayers today. Zoey Grace Needham is a super sweet little bucket of love I've had the priveledge to follow recently. She's a fellow Ds darling who also happens to have battled AML leukemia. She recently completed 6 grueling months of chemotherapy in her trademark style. Now after just barely being able to return to a happy, cancer free life she is once again undergoing a bone marrow biopsy today (WEDNESDAY) to see if her cancer has relapsed.

How I hate the "R" word.. in all it's forms.

Please stop by her blog "Little Wonders-Heather.blogspot.com" and experience the wonder for yourself. Leave Zoey and her family some words of encouragement and please, please pray that Miss Zoey is still cancer free!

Friday, August 7, 2009

Vincentio's Story / The Continuing Journey


V's open heart surgery took around 6 hours to complete and when we were called back to the cardiac intensive care unit we were incredibly relieved. His repair was successful. He was lying naked in a tiny bed covered by a warming light. His nurse was waiting in the room as we arrived to help explain what we were seeing. Although I did have some extensive experience working in a hospital, seeing all that equipment on your own child is just completely different.


The nurse calmly explained every tube and wire, beginning on his head and working toward his feet. He was kind and took all the time we needed to be comfortable with what we saw on our son. We were advised that the bone marrow sample was collected and that testing would take about two weeks.


He would remain in the CICU to recover for as long as he needed to be free of all equipment and major pain meds. They also wanted to see him tolerating feedings well too. They said it would probably be around ten days.


The CICU staff was wonderful, not that the others in the hospital weren't but up until now so much emphasis had been placed on helping us "adjust" to our son's genetic diagnosis. Strangely enough I was never sad or angry. I never once had a "why my child?" moment. He was just my son. Whatever package he came in, I was elated to have him.


Don't misunderstand, I know everyone handles these things in their own way, and they are entitled to their feelings. It's a natural process and there's no right or wrong way to go about it. But so many people were focused on the down syndrome that I began to get angry that they weren't more focused on his health. If you want to feel sorry, feel sorry that his heart is sick, feel sorry that he can't breath well enough to even eat. Feel sorry that at 5lbs he has to have his chest cut open and his heart stopped and there's a very real chance that he won't survive it all. Feel sorry for what might kill him, not for what he has to live with. As far as we were conserned down syndrome was something we could deal with, losing our son was not.


.... back to the story....


I was stunned and really impressed that he was off the ventilator that same day. He was off morphine and fentanyl within two days. The third day he was eating well and only requiring tylenol for pain. He was a different child. Born again.


That night I felt comfortable going home to sleep for once and the next morning I awoke to a phone call from the CICU that V was being discharged! Are you sure you're talking about MY son? He only had major open heart surgery four days ago!


Yes, he had successfully met all the required milestones and was exceeding them! He was ready to go!


Seriously???


Seriously.. later that evening, day four of recovery, our baby was home. He was warm and pink, he was breathing (without sounding like he had a chest full of gravel), and most amazing of all. He was awake and hungry.

We were still very nervous about the impending bone marrow results but each day that passed without word made me a little more secure that things were going to be alright.


Around ten days later we received word from the hospital that his bone marrow was clear. Once again this mysterious blood issue has resolved itself. They were referring to it as "transient leukemia", which is when the blood differential appears to be leukemic but resolves without treatment.

We were advised that childern with Ds were more likely to develope leukemia and those with "transient leukemia" were at a much greater risk.

Something we would need to watch and be prepared to deal with in the future if necessary.


Unnerving to say the least, but I was happy to have him home and healthy.


This was November. For several months Vincentio thrived, it was an absolutely amazing transformation, he was so alive in every sense of the word.


By January 2006 we began to see some disturbing changes starting to happen. V still had a hearty appetite, but now most everything he ate came back up. His breathing was also not as easy as it was before.


Dr. D was quick to check for the return of CHF and impaired heart function but this was not the case. She referred us to a pediatric surgeon due to the fact that it wasn't a cardiac issue. Plus, he had developed what appeared to be a bulging hernia at the base of his chest incision.

The surgeon (DR.P) said that the hernia looked to be simply a cosmetic issue from tissue not closing properly after surgery and he would prefer to close it when V was older. After several tests he also diagnosed the vomiting and breathing problems as being reflux related and V began acid reducers and a motility medication.

Aside from alot of puke and ruined clothes, he was holding his own until later that summer. In the summer he caught what seemed to be a bad chest cold that would not let up. After a visit to his pediatrician who found his O2 saturation to be only 86% after two breathing treatments, we were sent to the ER. He was given more nebulizer treatments and several tests. They came back showing that V had RSV. He had his last synagis shot only two months before and it was decided they were no longer needed. They were wrong.


He spent 10 days in the hospital and after the RSV tests came back negative we still could not get him off oxygen. Clinically he was getting much better but he still required a full 2 liters of O2 to keep his sats up. It was decided that he would be discarged with O2 at home. Before the discharge could be processed he had to have a chest x-ray to confirm that the RSV was gone.

We weren't overly worried until I walked by the nurses station and was stopped. His nurse told me that he would not be getting discharged anytime soon. Of course I asked what had changed and she said that she couldn't tell me anything more until the doctor came in.

That was the wrong answer...

Needless to say, after some not so subtle threatening, she advised me that all she could do was read me tha progress note in his chart. It stated that his chest x-ray showed "an enormous mass" at the base of his right lung.

Me: "What does that mean??"

Nurse: "I'm sorry I can't say any more, you're going to have to wait for the doctor."

Me: "What???"

Nurse: "I wish I could tell you more but I really don't know."

Please stay tuned for the next exciting chapter in the life of my littlest love ......
______________________________
To Heather, I would be honored to have you steal one of my quotes. After all, it was inspired by one of the strongest little men I've ever known.









Thursday, August 6, 2009

Vincentio's story / The Saga Continues


After the paramedics arrived and stabilized V he was transported to the nearest hospital which wasn't exactly used to handling children. They were great about making sure he was comfortable and his vitals remained stable. They did perform a series of chest x rays which showed his heart to be enlarged and fluid in his lungs. The ER doctor was fairly confident that he was suffering from pneumonia and began IV antibiotics.

Soon after they called Arnold Palmer and requested that he be transported by their mobile ICU as soon as possible. Unfortunately, there was only one vehicle at that time and it was all they way in North Florida on another emergency. We were told that it would most likely be several hours and for the ER to call again if his condition began to deteriorate.

After six LONG hours he was finally transported and he was directly admitted to the pediatric intensive care unit. The PICU allowed us back with him after about 30 minutes and the doc was waiting to explain the reality of what had happened.

V was in fact in massive congestive heart failure. His heart was very enlarged, his liver and lungs were full of fluid. He commented several times that we were very lucky that this happened during the daytime when we were able to see it . If it had occured at night he probably would have passed away while we slept.

After a week in PICU and with many new meds on board, we were discharged home and advised to see his cardiologist within the next two days.

Dr. D (our cardiologist) had us in the next morning and rechecked his weight and vitals. Even with some residual fluid still in his organs he was weighing in at 5lbs 8oz. Much smaller and younger at barely 5 weeks old than she had wanted him before surgery.
She upped his dose of digoxin and lasix and told us to return in one week for a follow up.

At our next appointment it was determined that his lungs and liver were not responding well, despite the meds V was still struggling. His weight was down to 5lbs 3 1/2oz and he wasn't breathing or eating well. She increased the digoxin again, to the maximum allowable dosage, and increased the lasix plus added another diuretic as well. She told us that his meds were now maxed out and the next weeks follow up would be the deciding factor as to how we would proceed.

That next week his weight was down again to 5lbs even. His breathing was extremely labored and his color was worsening by the day. As soon as Dr. D entered the exam room she turned around and left again. Moments later she returned to tell me that she had called for the mobile ICU for transport to the hospital again. She said he would be admitted to PICU again and would spend the next several days being stabilized for surgery. Doing it now was definitely more risky but we had no choice, he was dying.

Four days later, after many, many IV meds and tube feedings to help him gain some strength, he had his heart repair. It was November 8, 2005 and he was 7 weeks old.

The day before surgery he had many blood tests done due to the fact that he would require transfusions and to prepare for the surgery in general. The morning of the procedure Dr.D approached us about signing a form allowing a bone marrow aspiration to be taken from his sternum when it was opened.
His blood differential was again way out of whack and they were beginning to question the possible onset of leukemia.

We agreed and he was carried away to surgery a few moments later. We were stunned and numb somehow all at the same time.

More to come...

Tuesday, August 4, 2009

Vincentio's Story / Part Deux...


Little man was in the special care nursery for the first three days of his life and I was safely tucked in my bed on the OB floor attached to my sweet pump - o - pain reliever. By the second day I did realize that as good as morphine is, it makes me itch, and with a belly full of staples incessant scratching really isn't a desireable afteraffect. So.. bring on the benadryl.


To say the least I was doped. It's due to this fact that my first few days as a Down Syndrome Mommy were spent babbling aimlessly as my friends sat vigil at my bedside. I'm told I was pretty funny though.


On the second day I was wheeled down to the special care nursery to see my bundle of love up close and personal for the very first time. He was so beautiful from what I was able to see of him, all swaddled from head to toe.

He was tiny but at 4 pounds everyone was impressed at his size for being a preemie. At this point in time he was relatively tube free other than the NG for feeding. I was told that he had not yet developed a sucking reflex so I was encouraged to pump milk for him that he could be tube fed.


The staff in the nursery was wonderful, they were understanding and kind. They even made me cry a time or two. I couldn't have asked for better people to be surrounded by. I was lucky and I knew it.


On day four I was finally sprung and released to go home.. without my baby. Even though he was basically stable at that time, leaving without him was harder than I thought it would be.


That night at home I didn't sleep. How was I supposed to sleep without him? For over seven months we had slept together and it wasn't right that we were apart.

The next morning we awoke to a very calm phone call from the hospital letting us know that V had been moved during the night. He was now in the neonatal intensive care unit. Sometime during the night time he had become very pale and his breathing had become labored. He was quickly moved up to the NICU, blood cultures were taken, and he was started on oxygen. We were told he had stabilized and was sleeping peacefully.


... holy crap...


We quickly made our way into the NICU to check on our boy and found him sleeping soundly with his newly aquired O2 and more than a couple needle stick marks. Poor baby.


The neonatologist was in shortly after to tell us that he was not in congestive heart failure as they had feared, the blood cultures came back showing no infection but it did show some unusual types of cells in his blood, not the number of cells but the type. He assured us that they would recheck it in a couple of days and not to worry.


My next several days were spent trying to master the industrial strength breast pump that the hospital had graciously offered us to borrow. This was a feat. My other children were champion nursers. This plastic sucker was a tough one. It wasn't overly difficult to operate but just somehow really uninspiring. Achieving let-down was no easy task. The nursing staff was sweet, happy even for a few drops. "Any little bit works wonders" I was told.

Still, I felt massively inadequate, but I kept at it.


A few days later during our daily visit I excused myself to visit the "rose room", a quiet room solely reserved for pumping mothers. There was only one other Mom in the room who happened to be a hospital employee. She was pumping for her eight month old at home and it was obvious she has NO problem with her milk production. I sat meekly pumping away trying to distract myself but the sight of her gushing into that bottle was too much to resist. Apparently it was just what I needed, after a few moments I felt the let-down of my milk for the first time ever and emerged victorious from that room sporting TWO full volu - feed bottles. Even my husband was impressed.


Later that week V had another "episode" requiring O2 and stat blood cultures, and again his cell differential was a consern. Within two days they were testing normal again like the time before. I would later realize this was just the start of his normal abnormal.


These episodes continued throughout his stay in the NICU but his differential always reverted to normal within a few days without intervention. Imagine that, my kiddo was doing something medically strange and out of the ordinary.


He remained in the NICU for a total of four weeks, until he was able to have his NG removed and was able to take all his feedings by mouth. He already met the 4 lb weight requirement so feeding was our only real obstacle. He began to take full feeds by mouth on a Wednesday and on that Friday another ECHO was done to check his heart function and it was surprisingly good. We were told that if this trend continued we could have him home by the following week. Yipee!


We were quickly scheduled for infant CPR classes that would be a requirement for his discharge and had all of his prescriptions filled and ready. We would have to bring them to the hospital and show the nurses that they were filled accurately and we were able to dose them correctly before we were allowed to leave with him.


V was given a six hour car seat test where the baby is placed in the car seat and hooked to a pulse ox for several hours to be sure that they can maintain proper O2 levels while being transported. He passed! Woohoo!


Discharge day finally arrived the next Monday and it only took us ALL afternoon to get out of there but they were thorough. Can't argue about that.


The neonatologist mentioned that he hadn't eaten as well the night before but it was probably a fluke, they offered to keep him another day but I was ready and we were outta there.


When we arrived home he was just as they said he would be.. very sleepy. We were given an eating goal of 15ml's every three hours. We had to stick to it and if he wasn't cooperative we had to return to the hospital. The next two days were spent creating strategies to wake him up so that he would eat. What we were so sure we could handle (after all it's only 1/2 an ounce every few hours) was quickly kicking our butts.


I finally found that if I undressed him and rubbed a cool cloth over him he would get mad enough to wake up and eat a little. It worked but he always pooped out before the 15ml goal was reached.


On day three he was sleeping when we woke up and since his feeding wasn't due yet we decided to head for the grocery store for some breakfast goodies. It was just down the street and would only take a few minutes, so off we went with our little bundle covered up and secured like Fort Knox.

No germ would penetrate my fortress. We got more than a few strange looks but I've never been one to care much what other people think. I was ready to protect my munchkin at all costs.. and so we shopped.


About 20 minutes later we got back home and as I was unloading our groceries Daddy was trying and failing to wake V for his next feeding.

I told him to try the naughty washcloth trick which he did. It didn't work.

What? It always works, not always very well, but it always gets him mad.

Well not this time. I walked over ready to scold Daddy for not doing it as well as I do when I noticed something was different. V's eyes were still closed but they were rimmed in an ashy shade of gray. So were his lips.


Daddy was convinced it was bad lighting so he carried V over to the window and took off his onesie in an attempt to arouse him. When he undressed V I just about lost it. His entire back was mottled and his skin was a deep shade of purple. As Daddy carried him and rubbed his back it was obvious that his breathing was slowing, and came in awkward sharp motions. I called 911.


It was Wednesday, only two days after they told us his heart was functioning well. Only two days since we began our journey as a complete family all together, and I was watching Daddy do CPR on my love as he laid on the coffee table in our livingroom.


Stay tuned.. more to come...



How Did You Know???


I find myself in these past couple of weeks looking for exciting blogging goodies as our usual medical fiasco's have taken a sudden turn for the boring.

I've read many blogs of parents with Ds kids and how they first found out, and so I figured I would share my own experience.

My pregnancy with V was very unexpected to say the least.
All of my pregnancies were very unexpected, so nothing new.
My Mom used to call me "fertile Myrtle".

Anyway, all of my pregnancies have been considered "high risk" from the start due to the fact that I suffer from systemic lupus. So through them all I was poked and prodded, ultrasounded to the extreme, and generally under super human scrutiny.

Aside from some expected kidney issues and my blood platelets hovering near the critical range (the unfortunate norm for me), my last pregnancy was really my most unevenful.

I had all of the standard screening blood tests and nothing ever came back out of the ordinary. During one of my many ultrasounds his arm length showed a tiny bit short but I was told that even a few days off on the conception date could account for that, so no worries.

All was hunky dorey until my 32nd week when I showed up for work and within an hour, I knew something wasn't right.
I'd had braxton hicks contractions before and this wasn't it.
The pain was deep in my back, I had premature labor with all my kids (another gift from the lupus) but was able to control it with meds and bedrest until near term.
I wasn't panicked, I was even a bit shocked that I hadn't felt it before now.
I had to inform my boss who immediately pulled her car around to the front of the building and advised me that we were heading to the hospital NOW. I didn't argue.
She helped get me admitted and called my husband to let him know.

The nurses knew in pretty short order that I had done this in the past and we started the usual IV meds to put a stop to the contractions. It worked, and fast. Within an hour I was contraction free. They decided to monitor me for a few more hours and would then send me home to vegitate for a at least another month or more hopefully.

At around 11pm a nurse informed me that the OB doc had written my discharge orders and I was free to go.. are you kidding me???
You want my husband to wake up three little kids and come pick me up at 11:00 at night??

They took mercy on us and since the floor was pretty quiet they said I could rest for the night and he could pick me up in the morning.

Somewhere around 1am I woke up for my first trip of the night to pee.
When I was finished I stood up and suddenly felt a gush.
HOLY CRAP! I knew what that was, but in true me fashion I grabbed a towel and cleaned up my puddle before calling the nurse.
First she asked if I was certain that it wasn't urine, and then scolded me laughingly for cleaning the whole thing up since thay couldn't use my puddle to strip test for amniotic fluid.

I obliged her need and lost a little more right there in the bed.. how's that for service. I do aim to please.

Of course it was positive and since they were not prepared to handle a potential preemie delivery, I was redlighted downtown to Arnold Palmer women and childern's hospital.

During my initial admission they weren't overly conscerned, they even thought they might be able to hold me off for a while... NOT.

After more than a few failed attempts to stop my labor they realized that this baby was coming and they'd better get ready.

Moments later, as I was moved to a delivery suite, V's heart rate began to dip dangerously low with each contraction. The doc figured it to be stress from the contractions and wanted to try to replenish my amniotic fluid to give him some more cushion. An IV tube (without the needle) was gently threaded up into my uterus and each time I contracted and lost fluid, they pushed some back in. Sounded good, even worked some times. Not for me.

Still more decels in his heart rate so they decided to add a scalp monitor to the mix to get a better reading. Hint: It doesn't go on MY scalp.
One more piece of wiring up my @&$^. Needless to say I was uncomfortable. To make matters worse, I was advised that any pain meds would lower his heart rate even more so thay would not be allowed. An epidural was also out of the question in my case due to my lack of blood platelets and my low clotting factor. Yay!

A short time later they realized the situation was progressively getting worse and a C-section was going to be needed. I was given an injection to stop my contractions since there was no need to have them at this point.
It didn't work, and neither did the second one. By now I had gone from extreme discomfort to downright screaming pain.

Thank God they were able to get a surgical room quickly and gave me the gas. I've never been so happy to have a big black mask on my face EVER.

Sometime later I remember a brief passing in the hall and touching V's little hand, but I was blessedly drugged up. They had to do an "old fashioned" C-section (midline) incision instead of a small bikini line cut due to bleeding issues and I was left with quite the impressive scar and 15 staples holding my gut together.

Whoever inveted the morphine PCA pump is going to heaven. That's all I have to say about that.

The next morning I awoke in my drug induced fog to one doctor after another arriving to "prepare" me for what had taken place.
Apparently the signs of Ds were fairly apparent at birth so the array of necessary testing had already been done.

The geneticist came to tell us why she felt he needed to be tested. Outward appearance, low muscle tone, and the single crease across one palm. She said he didn't possess all the possible traits, but enough to warrant a blood test. We half heartedly agreed due to the fact that our third son also had the single palmar crease at birth and is totally "normal". She agreed that was unusual but insisted on the test anyway.

Next came the cardiologist. She was amazing. She explained that she had already done extensive echocardiograms and they all showed and ENORMOUS VSD. It was located in a odd position behind a major valve and that was the only thing slowing the shunt of blood between the ventricles. Therefore he was not currently in heart failure but he would be before too long. She calmly went over all the synptoms of CHF that we would begin to see and how to handle them. She was hopeful that with proper medication and treatment we could hold off surgery until he reached at least 10 pounds in weight and four months old. He was currently 4lbs.
She explained that at 10 lbs the mortality rate for the surgical repair he would need drops drastically, and at four months of age the brain is better developed and can more easily handle heart-lung bypass. So, that was our goal.

Stay tuned for part 2...