Best Christmas present ever!

Today we celebrated Christmas the way most people do, opening presents and visiting family. Many gifts were exchanged over the course of the day, but I received the best gift first-thing this morning. It didn't come from Santa. It didn't come from a store. It had no bells, whistles or flashing lights. This morning when I went to change the twins' diapers, Jacob said "Dada". He melted my heart.
If you celebrate the holiday, Merry Christmas; if not I hope you have a wonderful New Year.

...all I want for Christmas

Dear Santa,
I only have a few things on my list this year. I want Jacob to have a comfortable year in 2012, he has had enough pain in his short life. I want to have no more scares this coming year, 2011 has aged me emotionally. I want Jacob, Corrine and John Paul to have healthy sibling rivalries, its only natural. What I want most of all is the continuing strength I have found in great friends and family for they are the cornerstone of my sanity. I want them to know how much they mean to me and my family in both subtle and profound ways. This is all I want for Christmas this year.

Neurological evaluation

Today I brought Jacob in for an evaluation on his neurological condition. The doctor says that his brain is faring well considering the damage it received. His skull is developing normally and his brain shows no sign that it has atrophied. Today was the first time I got to see the MRI images. It was kind of scary. The healthy brain showed on the screen as light grey. The damaged portions were black. There was an awful lot of black. The stroke, while massive, spared the front and rear of the right hemisphere. His doctor was very positive and did not dwell on what would be lost but what was saved. His gross motor skills, speech, language skills and memory appear to be intact. His weaknesses will be in spatial relations, fine motor skills on his left side, problem solving such as math and staying focused. She said that it was more likely than not that he will attend a normal school albeit with some special services. He shows no signs of mental retardation. He is showing signs that his left brain is taking over some of the lost functions. He is moving his left arm and leg more and more each day. He really is a resilient boy.

Continuing progress

Jacob has been making slow but positive progress. His physical therapist has all but guaranteed that he will walk. It may take a few years and he may do it with a limp, but he will walk. Not much has happened in recent days and I really have nothing new to post so this will be short. I guess it is a good thing that not much has happened. When something happens it usually scares me half to death. As they say; no-news is good-news.

Comparisons and milestones

Being a twin, I have always found that I was compared in almost every way possible to my brother. It is just natural for people to compare twins. I find myself comparing Corinne and Jacob as well. Although they are fraternal and not identical as my brother and I, comparisons can be made. All babies are expected to reach certain milestones at certain expected times. At the age of ten months, Corinne and Jacob have not hit the same milestones.
Corinne cut her first tooth three months ago; Jacob, last week.
Corinne is crawling on her hands and knees while Jake has not learned to roll over yet.
Jacob is about 4 pounds lighter than his sister.
Corinne eats whatever you spoon into her mouth with little to no complaining. Feeding Jacob by mouth can be challenging.
While it is obvious why Jacob is so delayed it may be frustrating to a parent who is expecting too much. If you are reading this as a parent of a child with HLHS or that has suffered a stroke or other brain damage - do not get hung up on the milestones. It is a waste of time and energy worrying about silly things like that. Your child has gone through a serious trauma, let the child proceed on their own timeline.
When my older son was reaching the milestone the experts say he should start talking, he was obviously delayed. He had so many ear infections that we had to have tubes placed in his ears to help them drain. He had temporary hearing loss due to the infections. I was so worried that he would fall behind. I was constantly comparing him to his classmates in daycare. He is now 5 years old and the picture of health. I was worried he wouldn't talk as quickly as the other children but that worry has evaporated - I can't get him to shut up half of the time! Milestones may seem important at the time, but they are only meant to compare. If you are really very worried about your child not meeting a milestone, seek help. There are many social services that are ready to help you and your child get the help that is needed.
If you are the parent of a special-needs child, you may have already found your inner-strength and are coping just fine. If you have not yet found your inner-strength - don't worry about it, there is no milestone for that.

What I'm thankful for

This Thanksgiving is the beginning of Jacob's first Holiday Season. It is time to take into consideration all of the things I am thankful for:
My family - without them my life would have no direction or meaning. I have received immeasurable help from my family all of my life and now even more.
My friends - what can I say that could ever be enough to thank them? I have always valued my friends, but I really never appreciated it like I do now. From my Brothers in my Lodge to the friends and acquaintances I have made in my 43 years. I have never appreciated how much a kind word or uplifting phrase could lift my spirits. Friends are the currency of life and I am wealthy with them.
My son's caring staff - over the last year, Jacob has had the finest staff in the world waiting on him.  I have lost count of the doctors, nurses and techs (and thank you for the comment last week) that have helped him at every turn and bump in the road.
Cigna and AFLAC - I don't mean to make this a plug for the insurance companies, but without them I would be in one helluva hole.
My boss and my wife's - for being so understanding when I have to take a day off on short notice for an unseen doctor's appontment.
Many people have lost the meaning of Thanksgiving but I will never. Thank you for following this blog. I hope I can help or inspire someone somewhere.
Happy Thanksgiving to all!

Gimme a smile

Jacob seems to be very happy to be at home. This may be hard to understand but he is beginning to recognize me. Corinne, of course, has instant recognition of me and her mom, but Jacob does not. Jacob and Corinne both did not recognize us back in April when they were split up for an extended time. The brain damage that Jacob incurred during the stroke destroyed a good portion of his original personality. Areas affected involve memory, speech, vision and emotional response. The best thing I have seen today is his smile.  I have been trying to take a photo of him smiling but I may have a better chance of photographing a UFO; his smile is quite elusive. He has given both myself and Christina big wide smiles today. He may be both physically and emotionally delayed, but I think he will eventually come around. He is due to have physical therapy twice a week and the therapist has been very optimistic. Is he blowing sunshine up my ass? Who knows, but it is best to remain positive. I am not going to try to kid myself either. Expect the best - prepare for the worst. There goes my pessimistic nature again.

Life goes on...

Another week as passed and Jacob has become a part of the household in every way. His at-home physical therapy began yesterday and the therapist is confident that Jacob will regain the usage of his affected limbs. Jacob's brain has definitely started to rewire itself. It is a slow process but he has already come quite far. Since the stroke in April he has gone from semi paralysis to just weak and stiff on his left side. His locked stare to the right has all but vanished and the opthlamologist actually got him to follow an object in his left field of vision. I actually thought he was blind in his left eye but that does not seem to be the case. He keeps surprising me at every turn and has impressed on me the tenacity of human life. How could something so fragile be so strong?

One whole week with no drama

It has been one week since Jacob's last close call with the Grim Reaper. Thankfully this week has been pretty much uneventful. The incompetent nurses have been replaced with caring, smart and nurturing ones. You really can tell when a nurse cares. Her patient is not just another job but a human being. To me, Jacob is not just another baby, he is my son. A parent knows exactly what that means.
As we were trying to do last week, we are getting the twins into a routine. Jacob's easygoing nature is making this a piece of cake. Christina has introduced Jacob to the wonder that is "real" food. He has been started on applesauce and some bananas. He seems to enjoy the taste but hasn't got the whole opening of the mouth thing down yet. In the photo below Jake is being upstaged by his sister. She just couldn't resist leaning into the shot. Am I raising a Diva?

Home...again

Wow, that was scary. Of all the health threats and setbacks, this was the most frightening. I know that accidents happen - but this could have resulted in a homicide. I am not the type that bashes other people for making mistakes, but I think I am allowed his time. The nurse's actions were pretty damn close to incompetence. I don't know what kind of corrective action is planned for her but I want to be "in the loop". I don't necessarily want to see her fired, but I don't want it to happen again to someone else. We will not be inviting her back.
Today we are having a small celebration for close family. Christina put him in a really cute outfit for the occasion. See below:
He is even smiling more than I have ever seen him do now that he is home.

Murphy's Law

It has been a bad joke between Christina and I that if the doctors mention that something could possibly go wrong, it would. That just happens to be Jacob's luck. Today Murphy struck again. His new at-home nurse overdosed him on Lovenox, a powerful blood thinner. She gave him ten times the prescribed dose.
I was at work when Christina called and told me to haul ass and meet her at home so we could take him to the emergency room. Winthrop in Mineola and other local hospitals are not equipped to handle a child with HLHS. We were like a hot-potato, no one wanted to touch us - so off to Colombia we went. After an hour and a half in heavy traffic we finally arrived. We went to the brand new pediatric emergency at Colombia. The doctors and the poison control center decided that it was best to avoid the antidote and wait it out. It seems that the antidote carries its own threats. He was admitted around 9:30pm. So far it seems that there are no ill effects of the overdose, but time will tell. I think he is mostly out of the woods but the doctors remained worried about deleterious effects neurologically that may not show until later. More tomorrow. It has been a long day. I thought we were going to lose him today.

Habit forming

Now that Jacob has been home for a few days, we are starting to put a regular routine together. We have come up with a schedule that seems to be working OK for now. Jacob's nurse stays until 7:30 and we use that time to eat dinner, do JP's homework and bathe him. After that it is bedtime for JP and we have to get Jake ready for sleepy time too. Jacob is put down at around 9:00 after he calms down from the 7:30 injection. This is how they did it at CHONY and I certainly do not want him still pissy when we put him down. As he starts to drift off, I mix his nightly feeds and program his Infinity pump. I sneak in like a burglar and hook him up without much fuss - unless Corinne wakes up that is. I hate to admit it but the food pump makes life a helluva lot easier on his Mom and me. Now lets pray for an entire night of no-screaming. I really love having the whole family under one roof again. I'll have some photos to post soon.

Home

Jacob is at home with his family. This is where he really belongs. He is already interacting well  with his brother and sister. John Paul was showing him how to play Angry Birds on his mother's iPad. Corinne was inquisitive at the new arrival. Lots of work to do now so this will be a short post. Our whole schedule has been thrown into chaos as we determine the best way to care for the three of them. It has been a long time since all three rug-rats were together under the same roof.

First jab

We only have two more days to wait until Jacob comes home. We still need more training from St Mary's though. Today we practiced more with the syringe and hypodermic. They gave us an orange and some needles with a vial of saline. We turned that poor orange into a pincushion we practiced some much. Christina then was asked to prove her competence by giving Jacob a shot of Lovenox. She was brave and a good study as it went well with little crying from Jacob (and myself). She said it was totally different from the orange as there was a lot more resistance with skin; something I will, no doubt, have to find out for myself. I don't relish the thought of jabbing my son every twelve hours, but it has to get done.
I would like to thank you, the reader, for following this blog. I can see from the Feedjit app at the right of the articles that I know many of you; Kris from Pennsylvania, Kathy from Alabama, Jeanmarie from Maine, Mom from Kings Park, Kelly from Tampa (well, close anyway) and so many others that I have gotten to know over the years. There are others, however, that I do not know. I have had visitors from Canada, England, Poland and even India. Though I do not know you, you have my thanks, for this blog would be pointless if it were not read. If you have any questions, please feel free to contact me through this site. I will be happy to answer them. No one has to go through this alone. It would make me very happy if I could help others going through a similar situation.

Sticker shock!

One million three hundred eighty four thousand two hundred dollars and sixty three cents.  This was the final amount that was printed on the 56 page invoice we received from New York Presbyterian Hospital. The invoice was so long that the printer started to run out of toner on the last few pages. Although this is a lot of money, money that would take more than a decade to earn, I still cannot put a price on the smile Jacob had when I last held him. We last saw him on Tuesday at St Mary's Hospital when we went for more training. He is showing more and more personality every time we see him. I can't wait to get him home again; which has been delayed once again. Today was supposed to be the big day but the staff at the hospital and the home nursing service were not on the se page yet.  Tuesday is the next scheduled day for his homecoming. I can't wait to see Jacob and Corinne playing together for the first time in their lives. I can't wait to see the interaction between Jacob and John Paul. JP absolutely loves his sister and cannot wait until he gets to see Jacob again. We all cannot wait any longer. Will it be more Work? Yes. Will there be more reward? Absolutely! We adore the gift of Jacobs life. Whatever he goes through, he will have his loving family by his side every step of the way.

Special training

This weekend we went to St Mary's for more training. We did more training on the G-tube; cleaning the tube, removing and inserting it, etc. We also found out that he was still receiving Lovenox. Unfortunately, it is injection only. Jacob requires two shots daily. We were given an option of sticking him every twelve hours or only once each week. We chose the latter. The option we chose was to it in a hypodermic catheter into his leg once a week. It works like this:
It is kind of like an IV but the needle does not remain in the skin. There is a thin sheath that covers the needle and the sheath remains in place. After the needle is pulled, the body of the catheter is like a butterfly used in collecting blood. The butterfly is taped down exposing the port. The port is where the medicine is injected into. One painful jab per week is a lot better than doing it twice a day. The poor kid's legs look like a junkies arm. God, give me the strength to do this...please!
We are still on for a Thursday release.

Oops...my bad.

I got it wrong. Jacob will be coming home on Thursday the 27th and not the 24th as I stated in my previous post.

Second homcoming

Its official, Jacob will be coming home on the 24th of October! Christina and I are ecstatic. Jacob and Corinne were recently reunited at St Mary's last Sunday. They actually seemed to remember each other. OK, maybe not, but it was great to see them together again.

The best news

Jacob has been transferred to St Mary's Children's Hospital. He will receive two weeks of PT and OT for his stroke and then he will be home. His mother and I are over the moon with joy. He was in great hands in the hospital, but nothing can compare to the natural benefits of home and family.  Home in time for Halloween - I didn't think it was possible; a true early Christmas gift.

Good news is great news!

Today we found out some great news. Jacob will be discharged on Monday. He will be going back to St Mary's to complete his physical therapy. This is a huge step on his journey home. This 96 day stay cost $993,600. This is just for the room and does not include the three procedures, MRI, medicine and various ultrasounds. I only hope that you other hypoplastic parents reading this have good insurance and better luck with all of the complications. It is the complications that have really extended his stay. I couldn't imagine paying for all of this without insurance. In total, we are just over the two million dollar mark.
That being said, I am really looking forward to next week and the hope of an early Christmas present.

No-news is good news

There is not really a whole helluva lot to say this week on Jacob's condition. Things are pretty much status quo. One small thing though. Jacob was supposed to get an MRI today to finally determine the exact extent of the stroke damage - he got bumped. We will have to wait until tomorrow for that. Otherwise, he seems to be on the road to discharge. He will be discharged back to St Mary's Children's Hospital so he can continue his physical therapy, but that is one giant leap on the journey back home.

Never mind...

After waiting and waiting and waiting, we eventually dropped off Jacob in the OR for his procedure. We went up to his room to pick up his belongings and bring them to the ninth floor because he needs to be in the PCICU after the surgery. They dropped the ball on this one. After confirming that they had a room in ICU - it miraculously vanished - surgery cancelled.
After taking an entire day off from work and cancelling a dental appointment, the surgery is pushed back until who-knows-when. We are more than a little bit irate.

Gastric tube surgery

Today Jacob is getting rid of his nasal-gastric (N-G) tube in favor of a permanent gastric (G) tube. I am very surprised of what a few days can do to improve one's health. While we were waiting, the doctors were doing their rounds and we got to listen to the discussion about Jake. The doctors said that his heart condition has improved and they were actually positive about it. It has been a while since I heard good thing about his heart. It is just past noon now and we are going to be called down shortly. I hope this photo is the last photo showing the N-G tube coming out of his nose.

Even better News!

Jacob has been moved out of the PCICU and is in a regular room. He just keeps surprising me lately. This is a huge step on his long journey back home. Plans are being arranged for his transfer back to St. Mary's.  It is still a long way off, but there is finally light at the end of the long tunnel.

Now for some good news for a change

Ever since his catheter procedure that was touted by the doctors as being unsuccessful, Jacob has actually been doing great! He has been extubated and is even off of the CPAP! The doctors have also cut him off of the milrinone to see how his heart is doing without it. Tonight's nurse, Corinne, stated that he seems to do better without all of the machinery that he has been on for over a month. Today was the first time since the Glenn procedure that his mommy has been able to hold him. Corinne (the nurse, not his sister), noticed that he has even been focusing better and better each day. He still has a little wander in his left eye, but c'mon, he had a massive stroke for goodness sake. Today was a good day; one of the days I consider a victory. I'll take them when I can get them.
Soon he will be given some tests to determine if he can be given a "G tube" so they can finally pull the N/G tube. The G is for gastric and the N/G is for nasal-gastric. The G tube will be surgically implanted and not be as irritating as the other tube. This will help with his feeding and hopefully a faster recovery than he is having now.

Comfortably numb

There are only a few times in my life when I find myself in a complete daze, as if my consciousness was floating somewhere above my body. One time was when I first found out that my unborn son had only half a heart; one other was when the hospital called us after a cath procedure was nearly fatal. That is how I feel today. Today Jake went in for another catheter procedure. This time to stent open a narrow left pulmonary artery. He seemed be on a decline in the past few days and one of the nurses agreed that he really needed to get this procedure done in order start improving. The procedure was to take about 2-3 hours. Jacob went down to the cath lab at one PM and didn't get out until six. After all of the waiting and anticipation, we wrest told that they really couldn't do very much. The entire left PA was narrow and could not be stented. They tried to widen the artery using a balloon to no avail. At this point, there is not much that can be done to make his recovery faster or easier. I also asked about his heart condition. I was told that they were not happy with the progress that he was making and that he would most likely need heart medication all his life to make it beat stronger. This is not getting any easier on Christina and I. We cope rather well with most of this stuff, as if we had a choice, but we avoid the talk about the worst outcome. Today has brought us closer to that possibility.
Today we met a couple of people that were visiting their grandson, Michael. He is three and was undergoing the final phase of the HLHS reconstruction surgery, the Fontan. We were telling each other of the horrors of seeing a loved one have to go through this and it reminded me of Joann who we had met before Jacob was born. Her son went through this 9 years ago. He also had major complications. This has given me hope once more that we will get through this. One way or another.

Left PA stent procedure

Right now we are sitting in Jacob's room waiting for the surgical team to bring him down to the cath lab. We had the usual discussions with the anethnetist and the cardiology fellow about consent, risks, what to expect, et cetera. He is wide awake and responsive.

Just another day

It seems like forever that Jacob has been in the PCICU. It has only been about a month and a half or so. More of the same good news-bad news I'm afraid. The good:
We brought Jacob's big brother to the hospital to see him; John Paul was ecstatic. JP only wanted to give Jacob as many stuffed animals he could find. Even though he rarely sees Jacob, he adores him. JP is a great big brother to both of his siblings. John Paul's art work is all over Jacob's room. It adds a very nice touch to the sterile room. Also, Jacob has not had a fever in four days. If all goes well, his stent procedure will probably be on Thursday. He has also been equated and is breathing only with the assistance of the CPAP.
The bad:
The nurse side that his blood pressure keeps dipping dangerously low from time to tome and he will have to be put back on milrinone.  Milrinone is a medicine given to heart patients when the heart is failing. It gives the heart a boost. Unfortunately, you can't stay on it forever. My fear is that even with the stent his heart may not be strong enough to keep him alive.
He is resting comfortably now and I though it would be a good time for a picture.

Status quo

It has been a while since my last post but not much has changed. Jacob has finally been extubated but he is still getting fevers from a staph infection. This infection does not want to leave Jake alone. Last Tuesday he was scheduled to finally get the stent put into the left pulmonary artery. As we were getting ready to go to the hospital, they called to tell us that he had another fever and the surgery would have to be postponed once more. Corinne has had one tooth break through. Jake, however, seems to be months behind his sister. He actually looks much younger because he is so much smaller. Of course, it doesnt help that Corinne would strip a turkey leg like a pirhanna if I tossed it into her crib. Let's just say she's a good eater. We plan on seeing him tomorow. More then. Maybe some happy family photos too.

Glenn Procedure Three Weeks on.

It now has been three weeks since Jacob has had the Bilateral Glenn Procedure.  He is still on a breather and running low grade fevers from time to time. It feels like he is not getting better but it is just taking longer than I had hoped. He still has to have one more procedure in the next week or so. Doctor Vincent has to stent  his left pulmonary artery in the Catheter lab. They have to do this because the artery is atretic. He is not getting the oxygen he needs because of it.
One thing you parents of hypoplastic babies have to look forward to is getting familiar with enough medical jargon to get you through two years of pre-med. I feel like I could teach a class on the subject.
Jacob looks better and better each time I see him although he is making only slow progress. Slow progress is better than no progress. I am anxious to get him back to St Mary's Children Hospital so he can continue with his therapies. He is restrained here so as not to pull at his intravenous lines - and there are quite a few of those. The restraints prohibit any physical therapy. His chest wound looks great but I can only imagine how much it hurts him. Perhaps in three more weeks he will be past all of this and in a regular room. For now, we wait...as if we had a choice.

Here we go again...

Jacob has been running a fever for a couple of days and his blood culture came back positive for a staph infection. His blood saturation started to drop and the doctors decided to sedate and intubate him again. One step forward, two back.
I don't want to sound pessimistic but this is starting to wear me down. I don't think I am getting depressed just yet, but I can see it happening. I want to remain positive and upbeat for any other hypoplastic parents that may read this but they will understand that this is one of the "downs" in the so-called ups and downs.
Right now we are playing the waiting game again waiting for Jake to fight the infection back. He is a human pin cushion right now and looks just beaten. Not literally of course, but you can tell he is having one hell of a bad time.
It is now unlikely that he will be home by September. Let's hope for Thanksgiving.  Easter to Thanksgiving is a very long time to be away from home.

Day by day, a little bit better

It has been 9 days since Jacob has had the Bi-directional Glenn procedure and the completion of the Norwood procedure. After a scare or two, he is getting better day by day. We feel that he is really getting out of the woods.

His chest was finally closed after his swelling went down and the staff is slowly bringing him out of sedation. I would love to see him fully awake, but I have to wait. He is still not breathing on his own, and will be transitioning to a CPAP for some time but he is expected to be extubated in a few days.

Hanging in there

Jacob's heart condition is improving and it is doubtful that a transplant is needed. Jacob is proving to be a tough little kid. His swelling has gone down a lot. After tomorrow I feel that I can rest better. I am anxious to see him wake up. No one knows if the surgery has any effect on his neurological condition. He did not go into any distress like he did after his last procedure so I don't think another stroke will be an issue, but I am keeping my fingers crossed anyway. We won't know until he is awake and completely out of sedation. He has been under so long that it may take a while to bring him out. At least things are starting to look up. I intend to make this blog inspirational and not pessimistic but we are going to have to wait until Jacob is home and I can hold him in my arms every day. Sorry folks.

Complication...

Tonight is going to be another long night as I lie awake thinking about the implications of what two of the cardiologists said today. One said that Jake's heart was not beating as strongly as he'd like to see and the other said that while that was true, Jake's heart has just come through a serious trauma and needed time to heal. I hope that the second cardiologist is the right one. If the first one is right, it means that Jacob's condition will continue to deteriorate and he will be eventually put back on the heart-lung machine and put on the transplant wait list. A transplant is not an option I particularly care for. Jacob would have to take anti-rejection drugs all of his life making him susceptible to a great many immune system problems. A simple cold or ear infection turns into a big deal.
When the twins were born, we saved their cord blood in the hope that one day science would have progressed enough that a new heart could be grown in a Petrie dish somewhere. Maybe one day his heart will be replaced by one grown in a lab from his own stem cells, but that is not possible right now. Other than the problems a transplant would create, there are not a whole lot of five-month-old hearts waiting for recipients. Infant mortality in this country is pleasingly super-low...unless you are the one waiting for the organ.
Before any of this happened I was a supporter of organ donations. A friend at work has had a double lung transplant almost ten years ago at NY Presbyterian and he celebrates every year by hosting a charity golf outing at Rock Hill in Manorville. I am going to be pestering him a lot more with my questions...sorry In advance Charlie.
I am trying to stay positive and retain the sanity that I have left but it is getting harder as time goes on. Just when I think Jake is doing better, life throws him a curveball.
I can't say enough for the the support that I have received from close friends, friends I am not as close to as I would prefer, past acquiantances from days gone-by and, of course, family both close and extended. Now I seem to need the support of the Big Guy upstairs. I hope He is listening to all of the hopes and prayers being said for Jacob.

A sigh of relief

Jake's surgery is over and went well mostly. They could not close his chest due to swelling and they are going to keep him unconscious for a few days until they can close him up. Seeing him cut open with all the tubes sticking out of him was a little unsettling and not for the squeamish. The next twelve to twenty-four hours are the most critical and he may go into distress at any moment. That being said, the nurses told us to get the hell out and get some quality sleep because we live close enough to do so. I was pondering the thought of staying the night at his bedside but staff knows best. The guy i saw tonight sleeping in the waiting room on the couch will wake up with a terrible backache. He did not look comfortable. Jacob is still in critical condition and not out of the woods yet, but this was a big hurdle for Christina and myself as well as Jake. A lot of people say to me "I don't know how you do it." The truth is that I don't know either. I guess I have to do-it because nobody will do it for me. Right now I'm tired, sore from sitting and letting the iPad correct my spelling. I am not thinking clearly and have to hit the sack. Another long day at the hospital awaits and it's going to be 100 degrees in Manhattan tomorrow.

Hope, thanks Pandora

The last thing that Pandora released when she opened the box was Hope. I do not see hope as the curse to humanity that was told in the story. I am now waiting in the Pediactric ICU at NY Presbyterian and hope is the only thing that is keeping me going right now. Jacob is downstairs in the OR getting the Bilateral Glenn procedure, completion of the Norwood procedure and removal of the pulmonary artery bands that limited the blood low to his lungs. We got here at around 9:20am and we got to hold Jake for what we know could be the last time. We signed many consent forms for the procedure and were told of the risks. We already knew that this surgery was risky. What we did not know was that the stroke he suffered was hemmoragic and not ischemic. A hemmoragic stroke is much more dangerous. The neurologist had to clear him for surgery because there are additional risks associated with a hemmoragic stroke. If it were not for hope, we would be going through despair and depression. We are receiving so much support and well wishes from friends and family and we are grateful for it. Thank you everyone for your prayers and support. We are told that we would probably not hear anything until 7:00pm or so. This is going to be one of the longest days of my life.

'Twas the night before surgery

Tomorrow is the big day.  Jacob is going in for the Glenn Procedure to move the superior vena cava and the aorta.  The procedure will also include the removal of the atrial septum.  This will be his most extensive and most risky surgery to date.  The operation is scheduled for 1100AM and should last 4-6 hours.  It is going to be a long, long wait for his mother and I.  On the positive side, he will be stronger and his heart will be less strained.  His lungs will also be less likely to be affected from his heart due to the fact that the lungs will be supplied with blood from the body and not directly from the heart.  This is considered a low pressure flow and is less damaging to the lungs.  I am not looking forward to seeing him in recovery.  When he was an infant, he looked like hell afterward.  Now he is more aware than as a newborn.  I just hate to see the little guy in pain.  He's a screamer like his sister and I think he is going to give the staff a hard time.  I don't think I am going to get a lot of sleep tonight...

The anxiety sets in...life on hold

As we are less than a week from Jacob's next major surgery, the Glenn Procedure, Christina and I are becoming rather anxious.  Last night we discussed the all-too-real possibility of  having only two kids to raise after Wednesday.  Both us us have always known the risks behind this procedure but this is the first time we laid it out on the table how each of us feel.  While I keep pushing away the thought of losing Jakie, I still feel it is a strong possibility.  Christina and I both have bad-feelings about this surgery.  This poor kid hasn't been able to catch a break since birth, why would that change now?  Last night we discussed the issues of life insurance and funeral costs.  I know it sounds horrible, but we have to be honest with ourselves; he may not make it out of the OR on Wednesday and we have to be prepared for it.  How do you properly prepare for the death of your child?  I know we should be planning for his future, but we have to deal with the present first.

Back in NYC.

Jacob's stay at St Mary's was cut short last week after the doctor found that his blood pressure was a good deal different from side to side. We are back at CHONY.  The doctors' concern is that there may be something going on with one of the stents.  Jake's next surgery is scheduled for July 20, 2011.  This is the "big one."  The first surgery back in February was minor compared to this one.  This is the first time they have to arrest his heart and put him on a heart-lung machine.  I am anxious to say the least.  He is starting to sweat a lot just like before the last catheter procedure.  That means his heart is working overtime and he is just lying there. It really is time for the next step.
As far as his stroke recovery is going - he looks good.  His eyes cross less while he looks around. He looks left a lot more now.  He still has much weakness in his left arm and leg.  He sure cries like a normal 5 month-old. Deafening.
He is just too cute for words.  I think that, like his sister, he is starting to teeth.  He is still being fed via n-g tube though and won't be needing them any time soon.
FOOTNOTE:
NEVER DRINK A BEER WITH DINNER WHEN YOU HAVE A CHANCE OF BEING CAUGHT ON THE CROSS BRONX EXPRESSWAY.

A Happy Father's Day

Today was a good day.  Father's Day 2011.  I went to St. Mary's to visit with my son.  Jacob is now in the Nursery with all of his peers but is still receiving excellent care from the staff.  We brought in the whole brood to visit little Jake.  Corinne was nonplussed but John Paul was almost as excited as I was to see Jake again.

We had Jacob and Corinne baptized shortly after birth right in the hospital due to the fact that we didn't know if Jacob would make it through his first week of life.  Although they are baptized already, we are having a formal baptism next week.  The twins couldn't be in better hands with their new Godparents.  All of this really is my excuse to break Jake out.  We are getting a day-pass so he can accompany his sister at the church.  St. Mary's may be one resident short come lights-out.

I hope your Father's Day was as enjoyable as mine was.  I feel very fortunate for the time I have with my son.

It's Only Been Four Months

So much has happened since the twins were born that it seems incredible that it has only been four months. It just doesn't seem real to me that all of this has happened in just 120 days.  The events that have happened since then have changed me forever; I hope for the better.  I have a better outlook on the "little" problems in life.

Jacob has been moved to the nursery in St. Mary's and has just had a visit at CHONY to see Dr. Vincent.  She seems to think that Jacob will not need another catherization before his next procedure - thank God.  Tomorrow is Father's Day and I am looking forward to seeing my boy.  I am still getting the feeling that I am not bonding with him properly.  How can I?  I want him home, but I know he is at the best place he can be right now...I can wait.

We recently received the latest itemized bill from CHONY.  All I have to say is THANK GOD for insurance.  Jacob's medical bills are almost at the $1 million mark.  He has about 4 more weeks of hospitalization at St. Mary's and then he will be going in for the next big surgery.  It may be another three whole months until he is home again.  His next procedure is the Glenn Shunt.

This next procedure is a biggie. It involves stopping the heart and moving the large blood vessels around to make the heart a more efficient single pump for the body.  The whole stopping-the-heart thing scares the hell out of me...a simple cath procedure almost killed him last time.  If I have learned anything in the last 4 months its that worrying about something doesn't help.

Settling in

Jacob is settling in to his new surroundings and pulling the same tricks he used on the nurses at CHONY. He puts on his I'm-just-to-cute act and the staff just caves in to his demands for attention.  He has already become accustomed to hanging-out at the nurses station.  Due to the unavailability of a bed in the nursery, he is on a floor with older patients.  His roommate, Solomon, is 24 and already highly protective towards Jake. I think Solomon is a permanent resident at St. Mary's.  That being said, I have seen that my child's case, while undesirable, is nothing compared to the problems the other children here face.
Jacob will soon be moving into the nursery with all of the other all-to-cute babies, so his celebrity lifestyle will be coming to an end. 
St. Mary's is such a welcome and quiet change of pace from the big noisy New York City hospital.  It has a calming effect on me.  I feel less stressed out when I am visiting him there. I get the feeling that he is well cared for and at peace (not that he wasn't cared for at CHONY).  The only downside is that I don't get to make the bad jokes anymore like: "My son goes to Colombia University" or "one of my kids is on Broadway every night."  As horrible as that seems, not joking around and making light of this serious issue would drive me to madness.  We all have our devices that help us cope.

At St. Mary's (at last)

It seems like weeks ago we were going to have Jake transferred to St Mary's Childrens Hospital. Oh wait, it was weeks ago. Not even four months old and being wait-listed already. Anyhow, he is finally where he needs to be for the long road ahead. The staff, like CHONY, is first class. They give you the sense that they really care. Only time will tell of how far he will recover. I find it funny looking back and remembering when he only had that heart thing to contend with. Like it was something minor. Life's rollercoaster has really given little Jake a ride.

Missing Persons

This holiday weekend we enjoyed a barbecue at long time friends house. Our four-year-old was having a sleepover at grandmas while Christina and I brought Corinne with us. While we were there, we bumped into another long time friend who had also recently given birth in February. She has a beautiful baby girl. As we enjoyed the day and traded war stories, we introduced our new children to those who passed by.  When we told people that Corinne was a twin, we noticed that everyone looked at the single stroller and put puzzled looks on their faces. "Where is the other one?" It was not hard telling people what had happened to Jacob. It has become part of our daily routine. It has, however, made me miss Jacob more than ever. He is being moved (finally) to St Mary's tomorrow. He will be closer and a lot easier to visit.  We can even apply for day-passes so we can take him out every now and then. This whole ordeal has made me appreciate things in ways I never thought of before. I have learned to appreciate the short amount of time we have on Earth. I want to spend every second of that time with my kids. I know it is impossible just the same. Don't throw away that time you have. Spend it wisely. Younever know how much longer you have. Of the last three and one half months that Jacob has been alive, he has only spent one month at home with us. I will cherish that time and I am looking forward to August when he may be back home again. My son, I am missing you dearly.

Can you be pissed at God?

This event, starting in November of 2010, has shaken my faith to the core.  It has always been said that we mere mortals cannot see the divine wisdom of the Creator.  Why are there earthquakes and tsunamis that kill thousands or tornadoes that devastate entire communities?  Why make an innocent infant with half a heart then kill half his brain?  What divine wisdom is that?  Why make people suffer?
When I first learned about Jacob's condition, I was pissed; pissed at God.  Why did you do this to an infant?  What has he ever done?  I remained angry for quite some time.  After Christina and I came to terms with the prospect of raising a child that has a serious cardiac issue, I came to terms with my feelings towards God.  His life was a gift to us.  If he lived three days, three months or three years - it is all a gift to us.  I had to focus on what we were given; the hand we were dealt.  There was no point pondering the "what ifs".  There was only the "what is" so deal with it and move on.  We couldn't just dwell on the negatives - we had to find the positives and exploit them.
What kind of positives are there in something like this?  Here is what I've termed as positive and in no certain order:
I have met world class doctors, nurses and other staff that treat patients and their parents with genuine care.
I have seen the depths of despair and the ecstasy of parenthood.
I have seen the true value of good friends and the good nature of total strangers.
I have seen a strength in myself and my wife that I never thought possible (honestly, I thought I'd be a puddle of goo by now.)
Is this the true nature of faith?  Do horrible things have to happen to bring out the good in people?  Maybe, maybe not.  I think that the good is always there, but it needs a catalyst to release it.
Maybe the old cliche that God works in mysterious ways it true.  If all of this had not happened, would I appreciate my friends and family as much?  Is there a Butterfly Effect that effects all of the people in Jacobs life as well as those in mine?
I have seen, as you may have, the "invisible family", the one with the kid in the wheelchair or the one with the deaf child.  I have always turned away from them because I have felt sorry for them and that it was impolite to stare.  I know now that I may very well become that invisible family.  I do not feel ashamed or embarrassed.  I welcome stares and questions.  Jacob is my son and I will be proud of him whatever becomes of him.  He will never be 100%, whatever that means, but he is part of me.
How can I stay pissed at God?  The saying is true that life is a journey and not a destination.  God has made me take roads I never wanted to take.  Now that I am on this road, I have to make the best of it.  Sometimes I actually feel that I am somewhat lucky for being on the road less traveled.  I will have experiences that others will never have.  Life is all about the experiences.  I guess I'm on this road for a reason.  The trouble is I have no idea where this road will take me.  Care to walk with me?

Introduction to St. Mary's

Tonight we toured what will most likely be Jacob's home for the next month and a half.  It is a small specialized facility with a caring staff. Located in a very nice neighborhood in Bayside Queens, it can be considered a pediatric nursing home. Beautifully decorated and nicely taken care of, it seems rather cozy and friendly. Jacob will be in the best of therapeutic care here. It is important for him to get therapy quickly.

Homecoming

On March 7, 2011 Jacob came home.  We had a small family get-together to celebrate the occasion. He came home to a family that couldn't wait to see him.  John Paul was so very proud to be the Big Brother.  We started to get into a daily groove.  Corinne was starting to do very well with eating while Jacob still had trouble.  Corinne would suck down 4 ounces in a hurry while Jake would only take 1 ounce by mouth and the rest of his feeding via tube.  A few weeks passed by and Jake's weight was increasing.  We were giving him a high-calorie formula to boost his weight without increasing his fluid intake.  Excess fluid would wind up in the lungs and he was on diuretics to help prevent that from happening.  Soon thereafter, we had to stop bottle feeding him, he would vomit the formula back up soon after eating.  The bottle feeding was too much too fast for the little guy.  We wound up feeding him almost exclusively via tube. His heart was working harder and harder to pump his blood and would need the second atrial septostomy soon.  We took him in for his procedure on April 21st and the rest you already read about.  Now that the history is done, my posts will be day by day in realtime.

A breif history con't.

...to continue where I left off before Jacob's stroke...
Jacob and Corinne were born at 4:00 AM on February 8, 2011. Jacob was whisked away quickly after a brief introduction. Corinne was kept in the O.R. with her mom and dad. I didn't even have a chance to take a photo of him. Christina was taken to recovery and I was put on ice. I wanted to see Jake but was told that he was being taken care of and was started on the medicines he needed to keep his ductus ateriosis from closing. If the ductus closed, he would die.
A few days later we got to take Corinne home. Jake stayed at NY Presbyterian. It felt as if I left a piece of myself behind. About a week later doctors Julie Vincent and Emile Basha performed a hybrid version of the Norwood procedure to begin treating the hypoplastic heart. He did well but looked like hell after the surgery.
He was recovering nicely when it was noticed that the hole between the atria was too narrow. In a normal heart a hole is a bad thing but Jacob needed it to stay alive. He was taken to the catheter lab for a balloon septostomy. This opened the hole called the atrial septal defect (ASD) so blood could flow freely to the lungs and body. After this procedure his next hurdle was feeding. Hypoplastic babies are notorious poor feeders. They would not discharge him until they were satisfied that he could take nourishment without vomiting. This kept him in the NICU for an extra week. At $10350 per day, that's an expensive hotel room. The nurses told us that he would probably go home on a feeding tube. We were trained how to insert the tube. It takes getting used to but you get over it.
Jacob came home after 27 days in the NICU.

Coming out of my funk.

After visiting Jacob last night and seeing that he is comfortable has begun to bring me out of my funk. I think I was actually becoming clinically depressed. Having Jacob fall asleep in my arms has reaffirmed my feelings of love and joy for him. I want no more than to hold him in my arms. The plan now is that he will be discharged on Friday and be transferred to St. Mary's Children's Hospital in Queens for intense physical and occupational therapy. I now feel less dread for his long and hard road to recovery. There are many cases such as shaken-baby-syndrome that have had positive outcomes with more serious brain damage. He will still have disabilities but we shall overcome them as a family. Jacob has a strong support staff that includes family, friends and his father's lodge Brothers. He will survive and he will thrive.

Good news, bad news

We received some good news and some bad news today. Jacob's doctors think he should make an acceptable recovery barring any further setbacks. The bad news, however, is that he has a protein in his blood called troponin. It is a protein secreted by the heart when injured. He should have none. The fear is that the heart is not receiving the blood it needs. Could this be related to the stroke? I am hoping he does not have a heart attack on top of the stroke.

Preliminary stroke results

Jacob has had an extensive stroke affecting most of the right hemisphere.  It is unknown how much his left brain can compensate.  His age is on his side since most of the brain has not been hard wired yet.  This stroke, while devastating, would be much worse in an adult.  Still at the hospital right now.

May 2, 2011 - My Darkest Day

This blog was supposed to post in chronological order from recent past to present.  This post will change all of my best laid plans.  Prior to today, my darkest day was when I found out that Jacob was going to be born with half a heart.  That was 11/3/10.  I am going to fast-forward (I'll go back, I swear) past the birth of the twins, Jacob's Hybrid Norwood procedure, first atrial septostomy and Homecoming up to just prior to his second atrial septostomy.

Jake had been home since March 7.  He started developing problems holding food down and it was determined that the main cause was that the Atrial Septal Defect (ASD) in his heart was closing up and he wasn't getting the amount of blood that he needed to flow throughout his little body.  It was decided that he would need another catheter procedure called an atrial septostomy to open it back up.  The idea was to use a balloon with tiny blades on it to cut open the atrial septum and allow blood to flow freely between the two atria.  The blades weren't enough and the doctor decided to put in a stent to keep the ASD open.  This meant that he would need blood thinners to prevent clotting around the stent.  The procedure went well and he would be home in a day or two.  That was Thursday April, 21st.  On Saturday morning, the day we expected to take him home, we received panicked emergency phone calls from the hospital informing us that Jacob was in distress and we needed to get there ASAP.  Forty-five minutes, 80 MPH and a driving rainstorm later, we were tossing the keys to the valet and running to the elevators.  Jacob had developed a mystery malady the doctors attributed to a post-op infection.  They still really don't know what caused him to get so sick so quickly.  A few days later (Thursday April 28th) he was regaining consciousness and opening his eyes.  He had an odd stare to the right and would not look left (see first photo above), probably from all the sedation which was slow to wear off.  The following Sunday we came in for another visit since he had been extubated and was breathing with the aid of a CPAP (Constant Positive Air Pressure).  He still had that odd stare, even when being held by his mother (next photo).  I started to worry and raised an alarm.  A neurologist was called in for a quick examination and she called for an ultrasound of Jacob's brain.  They said that the sedatives given to him were strong and would take some time to entirely leave his body and this was probably the cause.  Something was not right and it started eating at me.  They scheduled a CT scan for the following morning.  That morning was today, my darkest day.  Jacob had suffered from a large stroke in his right hemisphere.  At this point, 9:30PM, I am still in shock.  I don't know where to turn.  I don't know what to do.  Tomorrow we are meeting with the neurologist and staff to see what can be done and the extent of the damage.  I am worried sick.

Coming to terms

I hate to be all over the place with this blog but I’m trying to play catch-up to May 2, 2011.  I still have a good three months or so of history to go through before I get there.

That being said – It came time for my wife and I to come to terms with Jacob’s condition and all of the possible outcomes.  This was the first rough patch for me.  I didn’t know how to feel.  We had the joy of knowing we were having twins, a boy and a girl, offset by the disastrous news of the hypoplastic left heart.  All of my emotions were mixed about and I did not know how I was supposed to feel.  How is one “supposed” to feel when something like this happens?  I still don’t know.  I don’t think the experts know either.  I was torn by a mixture of pity and guilt.  Was it something I did?  Was it preventable?  How would the other children treat him because he would be weaker and smaller than normal?  How am I going to cope with raising a special needs child?  Am I special enough to raise such a child?  Would he be born with brain damage from the lack of oxygen?  Will my marriage survive?

To further complicate my emotional state, I found myself thinking dark thoughts.  What if he died shortly after birth?  Would it be so bad?  Wouldn’t it be better to lose him soon after birth than to lose him after I got to know him and see him develop?  Do I try to get to know him or do I keep my distance after he is born?  Am I just being selfish and thinking about myself?  These questions may seem easy to answer but they are not.  Not when the outcome affects you this personally.

I watch my older son and wonder:

He is almost 5 years old.  This is the age when Jacob is due to have his third major surgery – the Fontan procedure.  It is an extensive open-heart procedure to help palliate the hypoplastic left heart.  How will I fare seeing my son at this age in such pain after the surgery or even deal with his death if something goes horribly wrong?  Will I be strong enough to deal with the pain of losing a child?  Is anyone really strong enough?

I don’t know if it was the constant exposure to the problems of HLHS or divine intervention but Christina and I have coped rather well with all of the possibilities we have foreseen and some we hadn’t.  I guess we all find a way to cope.

You are not alone.

The hospital staff had given us contact information of families and survivors that are living through what we considered our little corner of hell.  I never realized how important it was to talk to other people that can empathize with you.  One outstanding mother was Joann.  Her son had a very difficult time with complications.  She is strong and resilient and always remained positive.  I am trying to emulate her but I can be pessimistic by nature.

The complications disturbed me.  Wasn’t it bad enough that my boy was going to undergo drastic surgeries?  Now there were the very real possibilities of complications.  They are the sort of thing you know are possible but you don’t want to think of.  They happen to someone else, right?  Something akin to a plane crash or earthquake disaster (or congenital heart defect). 

A Whirlwind of Doctors Appointments

After we found out that my unborn son had a hypoplastic heart, it was time to start seeing the plethora of doctors  who would help my son live after birth.  My wife and I took many trips to many doctors in the following weeks.  We almost got to know how to get around the labyrinth that is Colombia Medical Center.  I was quite impressed by the caliber of the staff at Colombia.  I knew that my son's life was in the best hands possible.  His cardiologist literally wrote the book on HLHS and his planned surgeon was on ABC for doing this type of surgery on a child in Boston.  I felt better about hypoplastic left heart syndrome, but was never comfortable.  At least once a week we were driving into the city from Long Island for an as many appointments as could possibly fit into one day's schedule.  Angel at Colombia was our "handler" and he did a great job with our schedule - a great asset to the hospital.
We were also given the contacts of several survivors with HLHS.  We were not alone.

In the beginning...

My son, Jacob, was first diagnosed with Hypoplastic Left Heart Syndrome (HLHS) on November 3, 2010 in utero.  It was a bright and beautiful autumn day that I will never forget.  My wife went for an ultrasound and I went golfing with some buddies from work.  On my way home, I got a call from my wife - one of the twins (the boy) had a problem.  She would tell me more when I got home.  When I got home she told me that she would not be giving birth at Winthrop as planned but at Colombia Presbyterian in Manhattan.  When she said that, my body went cold.  It was the first time in my life I had ever heard of HLHS.  I knew about other congenital heart defects but not this one.  A birth defect was the one thing I dreaded the most.
The rest of the day passed away in a fog as I was self-educated on the Internet about the condition.  I did not like what I found. His chances of surviving the minimum of three open-heart procedures was around 75%. All I could do was thank God we lived so close to one of the top medical centers in the country.
I knew that life, as I knew it, just took a drastic turn in a new direction; a direction I never wanted to go in.  In an instant we became that "Special" family.  The one you always heard about but were grateful that it was not you.

Getting started

This is the first blog I have ever made - please bear with me.

I started this blog to accomplish two main objectives:
Venting my feelings and frustrations about my son's condition.
Trying to reach out and help other parents of children with Hypoplastic Left Heart Syndrome.