May 2, 2003 - Dad's View:

Eye on the Prize

We wanted a sibling for our son. It sounded simple enough in principle. Yes we were older parents, but with cars and people I’ve always believed that its not the years but the milage that counts. We had tried for another baby since our son Paul was a little more than one, but three pregnancies led to three disappointments. When we found out in the fall of 2002 that we were pregnant with Wyatt, our son Paul was almost three. I was scared. The losses incurred in getting to this point were a huge emotional strain on our small family. Would we catch a break this time? For twenty weeks we did. Ultrasounds showed good growth and a strong heartbeat. Knowing what we’d been through to get to this point, our OBG called on Christmas eve to give us amnio results that showed the right number of chromosomes with an “X” thrown in for fun. Our son would be Wyatt Mattaway. Wyatt because my wife has a soft spot for cowboys.

Biology 101

As often happens in life, our luck had run out more than three months earlier without us even knowing it. Out of the million different things that have to occur in perfect sync for a baby to be born, at around eight weeks something that was supposed to zig decided to zag instead and Wyatt’s path was set forth. Thousands of times every day, cells divide, arteries, veins and valves form and the fetal heart forms four chambers for another healthy baby. Or not. A blocked artery, a valve that fails to open precisely the right width at precisely the right time and the babies left ventricle does not get the tools it needs to develop. The doctor informed us that without surgical intervention, the resulting single ventricle physiology is not compatible with sustainable life. But for us, ignorance was pure bliss. Clean amnio in hand, four happy ultrasounds behind us, my wife went back to her OBG for a 23-week ultrasound to measure the babies body parts and growth. Confident that we were finally on a roll, for the first time in six pregnancies I elected not to go to the ultrasound appointment. It was Friday, January 31, 2003, a nice winter day in the midst of a snowy, freezing New York winter from hell. The tests were all good and only three weeks ago I had seen that little pulsing star that after nearly two-dozen ultrasounds I knew signified that our baby had a nice strong heartbeat. Instead my wife took my Mom, who after two babies four decades earlier was excited to see this new technology in action for such a happy occasion. After a half hour or so of the usual measurements, oohs and ahs and discussions on how much little Wyatt resembled Paul in-utero, we got our first hint of the problems to come with the words, “I’m having trouble getting a clear four chamber view of the heart”. Four hours later a cardiologist at Hackensack Memorial Hospital in New Jersey is telling my distraught wife and mother that our son to be has a relatively rare and extremely severe congenital heart defect known as Hypoplastic Left Heart Syndrome.

Analyze This

Dazed, confused and overwhelmed by “life’s rich pageant”, to the internet we went. Tunnel vision took over. Space shuttles blow up, children lose their parents, and I could care less. Hypoplastic Left Heart Syndrome. It sounds like the name of a bad speed metal band. We research. We surf. We email Dr. Tworetsky at Children’s Hospital of Boston to see if the “science fiction procedure” (in-utero catheterization to unblock the artery to the dying ventricle) is an option. It is not. The ventricle is dead and nothing is going to bring it back. Our options are not ideal, but at least there are two more than there were twenty years ago. Doing nothing and letting our son die is not a choice. That leaves a three-stage “Norwood” surgery or a complete heart transplant. Pluses (not many), minuses (too many to count) for each. Where should we go for second opinion? Where should we go for the procedure? I am now using words like “palliation”, “catheterization” and “procedure” routinely in conversations. I am now the father of a very sick little boy. Colleagues at work listen sympathetically and walk away thankful that mine is not their life.

Advantage Mattaway

I analyze municipal bonds for a living. It’s a job that I enjoy and do well but one that when described to people at parties leads their eyes to glaze over as they rush to excuse themselves to freshen their drink. It does however give me a good insight to the best health care providers in our area and whose facilities would best suit our needs and personality. Living about 40 miles northwest of Manhattan, we are fortunate enough to be only about 45-minutes from Columbia Presbyterian Hospital, 2 ½ hours from the Children’s Hospital of Philadelphia and 3 ½ hours from the Children’s Hospital of Boston. In a rare instance of good luck, these facilities happen to be three of the best, most experienced pediatric cardiac centers in the world. We speak to doctors at all three. They all point to recent advances and boast of success rates north of 80% for the first surgery. They all say that our odds improve somewhat because we found out in advance and they can immediately take steps once Wyatt is born to minimize damage to his already broken physiology. They all say that his echo-cardiogram look good and his is a textbook case of HLHS with mitral stenosis and aortic atresia. His tricuspid valve is not leaking and all his other heart related physiology appear to be in good working order. I never want to be, nor did I want my son to be, a textbook case of anything. The internet is a great source for information. I use it daily in my work for research and I don’t know how we would have been able to get through this without it. The support groups and informational sites provide more information than can be processed, especially when emotions are at a fever pitch and the stakes are life and death. There are no filters on the information. Information and opinions come through without subtlety or nuance. If your child makes it through the surgeries, then your doctor or hospital is “ THE BEST!!!. If not, you have a website playing sad music showing pictures of little angels who tried their best but ultimately went up to heaven where everyone has a healthy heart. Our date of induction is scheduled for Wednesday, May 21st. As I sit here writing this I have no idea if we will get to take Wyatt home and if Paul will get to play with his little brother, or if instead we will be the next family whose website features a sappy song and angel rising up to a better place. It is a horrible but necessary part of the process. I cry for the children who never got a chance to be what they were meant to be. I refuse to believe that it benefits anyone for a child to die young. I feel for the parents whose best intentions were not good enough. I am jealous of the parents of healthy children at the playground in the park. Not in that I would wish Wyatt’s condition on anybody else, no child deserves that, but in that it so absolutely sucks that this will be his path.

CHOP

In the end, we exercised the one element of control that we did have. We chose a hospital and a doctor. The hospital is the Children’s Hospital of Philadelphia. The surgeon who will reconfigure the internal plumbing of our sons heart is Dr. Thomas Spray. Both have excellent reputations and a huge amount of experience with this particular defect. They will either save my sons life or not. No pressure. We chose CHOP as much for its status as the “best” children’s hospital in the country as for its dedicated pediatric cardiac intensive care unit and the quality of the care after surgery. It appears at this point that the surgery itself has become so commonplace that the aftercare and risk of in-hospital infection has become the key determinant of patient success. We liked CHOP’s CICU facilities. They are clean and open. Family is allowed to be at your child’s bedside 24/7. The staff is very touchy feely, (at least until I start bitching about missed med deliveries at 3 AM!). Columbia-Presbyterian doesn't even compare. (This may change in 2004 when Columbia moves into a brand new facility but that will be too late for little Wyatt who only has one chance). Boston is also a great facility but too far away. While we hate to think pragmatically at a time like this, we do have a three-year old, and 2 ½ hours away from home is a lot better than 4 hours. We’re hoping that the three-to-four weeks we’ll be living in the Ronald McDonald House will not be unduly disruptive as it is.

Home Stretch

Our current game plan is for me to drive down and drop my wife off at the Ronald McDonald House in Camden, New Jersey on Monday May 12th. That way she’ll be close to CHOP in the event she goes into pre-term labor. I’ll then drive back up, spend a last few days tying up loose ends at work and then drive down to be with her on Thursday as we wait for the 21st. My folks will take care of Paul for a few days and then drive down to Philadelphia on the weekend to be with us and wait for Wyatt. I feel confident that we’ve done our homework and made a solid choice. In the end its up to Wyatt. Son, I hope you find our family worth fighting for. However things turn out, we’ll be right there with you. You have taught us so much over the last five months. I look forward to teaching and learning from each other for the rest of what I hope will be a long and healthy life together

May 11, 2003 - Thoughts from Mom:

Happy Mother's Day

Today is Mother's Day. I awoke with our 3 1/2 year old son, Paul, running into our bedroom, climbing up on our bed, and toppling onto my "big" belly, with a great, loving "squeeze hug". "I love you Mommy!! You are sooooo cute!!" he squealed, as he grabbed my foggy head in his little hands, and plastered my half-asleep face with kisses. My unborn son, Wyatt, kicked from inside, rudely awoken from his sleep too, with his big brother's weight thrust upon him.

One son in my arms, the other inside my womb, and my beloved husband beside me, all of us safe, cozy and alive on our Kingsize bed. In our beautiful home. What more can a mother ask for? I am blessed, and I feel blessed.

After a long and lingering family cuddle session, Bruce and Paul went downstairs, so "mommy can relax in bed". I telephoned my own mother (who teaches and lives in Taiwan), to wish her a happy mother's day and read to her a list that I had written in the early hours of the morning of the many things I was grateful to her for. All too often we focus on the things our parents "didn't" do for us, or that they did "wrong", but we forget to tell them and thank them for all the countless things they did and do do for us... the many things they got just right!

My mother brought 5 children into this world. She lost one of her babies, her second child - her beloved daughter Sophie - when Sophie was only 11 months old. In those days they called it "Crib Death". "Sudden Infant Death Syndrom" it is referred to nowadays. They had been on vacation in Europe; my mother and father, my uncle, two of my brothers and Sophie. Mom awoke to find her baby girl, dead in her crib. Silently, wordlessly, sometime between her last goodnight kiss and the morning, little Sophie had slipped away. No warning. No identifiable cause.

How does a mother deal with that? One minute you haven't a care in the world. The next minute, your precious little baby is dead. How do you go on?

The death of Sophie crushed my mother. I think it may be why she can love very deeply, but only from a distance. She has never since let anyone, not even her own children, "in" too deep. She has survived and gone on, but the grief and loss have never left her.

The loss of our three babies - "Snow Angel" at 13 weeks in utero, "Whisper" at 6 1/2 weeks, and "Megan" whom we delivered and held in our arms at 21 weeks - these losses have been devastating for us. Though I cannot imagine the depth of loss one would feel after having held their living baby in their arms, looked into her smiling eyes, been serenaded by her laughter, become attached to the person that she is becoming and had the time to really bond with her.. I have come to learn that loss is loss. Though the degree of what you feel may be different, the essence is the same. One cannot measure the "level" of loss a mother feels, nor how much she loved her child, by the length of time the child was in her life. Equally, the birth of one baby cannot replace the loss of another. A mother's love for her child begins the moment she feels it's first kick inside her womb. Perhaps even before.

I asked my mom if it was okay for me to share her very personal loss on this web page, and she told me that as long as I was writing from my heart, I had her blessing. I then asked her if the 11 months she had with Sophie was worth the pain of losing her. Like the famous question: Is it better to have loved and lost than never to have loved at all? My mom replied "Never would I have traded those precious months for ignorant safety. That experience of Sophie's total joy and gurgling laughter was so magical it made everyone coming in sight of her become infected from head to toe with that same joy. The briefest glimpse of this level of unbounded joy and love is transforming for one's entire life"
"Of course I would grieve a thousand times for the unique privilege of having known each of my children, no matter how briefly" mom told me.

In "The Prophet" Kahlil Gibran tells us:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

As I write these words, Wyatt is gently nudging me from inside my womb. He reminds me of the incredible miracle that is taking place between us. In this moment, he is alive and he is safe. I have been entrusted with the most sacred of assignments... to be the vessel for another beings life. This assignment is a precious privilege, and I am grateful to have the opportunity to be a part of such a miracle once again. May I always remember this, what ever our future holds.

Thursday, May 15, 2003 - Bea Writes:

We're Off!

So the next leg of our journey has begun. This morning, after checking and re-checking every detail of our home.. making sure garbage cans were all empty, fridge was cleaned out, plants all got a good watering, detailed instructions were clearly written out for Kathleen (our neighbor who will dog and house sit while we are away)and everything we could think of had been packed into the minivan, we set off. First, we went to drop Paul off at his nursery school, where they were going on a class outing to Bear Mountain Park, to visit the zoo and have a picnic.

I was so grateful for this outing and for the beautiful weather... it was something Paul was really looking forward to, and his excitement made it a tiny bit less painful for me, when it came time to say goodbye. I gave him a final "squeeze hug" and a ton of kisses, and watched him happily join his teachers and friends in "circle time" before they would load onto the school bus.

Bruce and I then drove down to Camden, NJ, just across the bridge from Philadelphia, and a mere 15 minutes from the hospital. We are here now at the Ronald McDonald House of Southern New Jersey where we will remain until I go into labor, or they induce labor (on Wed. the 21st) - which ever comes first.

Plan is that Paul's Nanny & Papa (Joyce & George, my in-laws) will pick Paul up from school this afternoon, and then they will all join us here on Sunday. Paul absolutely adores his Nanny & Papa, and has spent many weekends with them since birth, so I am not in the least concerned about that. He will be fine for the next few days, and will be here on Sunday. It's just that I feel this real saddness, knowing that this is the last few days of his entire life (G-d willing), that he will be our only child.. that he has us ALL to himself. Part of me feels guilty, knowing that from here on out, so much of the attention that used to be all his will now be shared with Wyatt. Yet I know these are normal feelings for a mother to have just before the birth of her second child. I need to remember that the reason we wanted a second child was so that Paul would have a sibling.. so he wouldn't grow up an only child.

I guess I am also just scared, and filled with emotions, with Wyatt's birth about to really happen any day now and the ever present pregnancy hormones going full blast.

The Ronald McDonald House here is lovely. And I already met another woman who's due date is one day before mine. She also is scheduled to be induced @ HUP next Wednesday. Her unborn daughter's intestine is growing through part of her umbilical cord, and will need immediate surgery upon birth. We've already made a very nice connection, which is one of the aims of Ronald McDonald Houses: to put families in similar situations in contact with each other for mutual friendship and support. I am truly grateful for these wonderful institutions and the wonderful contributors and volunteers who make them possible.

And while I am on the topic of gratitude.. I want to thank all of you for your continued concern and support. It really means so much to us. I also want to thank my amazing, wonderful and absolutely # 1 OBGYN, Dr. Fred Rezvani and his staff, for seeing me through this very emotional and difficult pregnancy. You got me all the way to 38 1/2 weeks (and counting), and never let me down. You made me feel protected and cared for, and I can't thank you enough for what your care has meant to me! I love you guys!! And thank you, Denise, for putting me in touch with him in the first place!! Thank you, also, to my wonderful and amazing RCNS co-op-mates, especially Jill and Letty, who have been so helpful, driving Paul to and from school and having him over for playdates to give me time to rest and to prepare. You guys are the best

May 19, 2003- Bea Writes:

The Long Wait

Well, we've been here at the Ronald McDonald House in Camden for 5 days and counting. My wonderful in-laws- Joyce & Goerge, along with Paul joined us on Sunday. It was sooooo incredible to see our darling Paulie-pooh-pooh after 3 days apart. He absolutely LOVES it here at the RMH, since there are so many other kids to play with, and a large play room and tons of toys. Mostly, he zooms around on the numerous tricycles, having races with the many kids in wheel chairs.

Today was a lovely day, clear blue skies and temperatures in the 70's. After all the "false" or "practice" contractions I had been getting for weeks on end, suddenly everything has stopped for the past 2 days, and I've been getting really antsy. I suggested we all spend the day at the Philadelphia Zoo, so we could get in some fresh air and I could get in a lot of walking. We had a great time and were all pretty tired by the time we decided to head back to RMH around 4:00 this afternoon. So far, no signs of labor though. I really am getting nervous about having my labor "induced" on Wednesday. I discovered that they use the controversial drug "Cytotec" for induction at HUP, but I told them flat out that I will not let them use it on me. We will insist on nothing more than Petocin, but there always are risks when having labor artificially induced, and I pray that Wyatt will begin to make his entrance on his own, BEFORE 7:30 AM on Wednesday. Bruce & I have been trying every "natural" method of starting labor that we can think of.

In all this time, my focus has been soley on Wyatt and what hospitals and surgeons would be best for him. I never even thought about the birthing process. I know all about CHOP and have met his surgeon there, but I will be delivering at HUP, where I don't know any of the doctors and they don't know me. I've never even seen their maternity ward. I know that in the scheme of things, it is of little importance, but now that I am two days or less away from going into labor and giving birth, I'm suddenly quite nervous about the situation. How I wish my own OB, Dr. Rezvani could be here, delivering Wyatt! Waaaaaahhhhhhh!!!

May 20, 2003 - Bea writes:

Blessings

I am amazed and so touched by the the children here at the RMH. They are here with every description of physical and/or mental challenges... things you may never have even imagined.. certainly many conditions we had never even heard of. But the strength and dignity that these children carry as they go through their endless rounds of tests, surgeries and procedures... It boggles the mind.

I am awe-struck, too, by the way they can connect and communicate. It so happens that most of the families here at this time are from Puerto Rico, and speak little or no English. But that doesn't stop them from being able to communicate with Paul and visa-versa. And my darling Paul... he just amazes me. He has been seeing and meeting children with all sorts of conditions; a little girl with no hands, many children in wheel chairs and casts, many with large metal devices sticking right out of their arms or legs...several who have no ability to speak, and with most who can speak, no English. There are kids with varying levels of autism, and yet, eventually, Paul and the other "healthy" siblings, all seem to find a way to connect with the "handicapped" children here, and quickly they find some kind of game to play together, with what ever abilities they CAN find in common. They truly are inspirational, our children.

I've been waiting to see if Paul would have any questions about what he's been seeing. So far, no, though I know he is processing a lot. The other day, when he first met the little girl who has no hands, he was scared. She kept running up to him, with a delightful giggle and the biggest grin. She kept reaching our her arms and trying to touch Paul or hug him. He would look at the ends of her arms, stare for a moment, then quickly divert his eyes, and try to get away from her. For a while, she was happily chasing after him, while he kept peddling away on a tricycle. "NO!" he would shout. "Don't follow me!!". But not speaking English, the little 2 year old (who's birthday was yesterday), continued on, oblivious (or so it seemed) to Paul's discomfort of her "differences".

After a while, Paul came up to me and said "Mommy, that little girl was on the slide and she followed me. I didn't want her there so I pushed her. I'm going to say I'm sorry and play with her now." He just came up with that on his own. I hadn't even seen the incident. "That sounds like a really good idea, Paul" I told him, and gave him a big kiss and hug, and he was off. That was the last I saw of any discomfort on his part. He's been happily playing with her ever since, and was delighted to be a "guest" at her little birthday party they held in the dining room after dinner last night.

And the races; there are numerous boys in wheel chairs, none of whom speak any English. But when ever Paul sees them, he hops on a tricycle or a toy truck and challenges them to a race up and down the halls. HE hasn't won one yet, but that doesn't stop his or the other boys delight in the game.

There's a couple here, who's 4 year old little girl has a very rare disease called Canavan disease. It's a degenerative gene disorder, that is progressively destroying this beautiful child's brains, and most of her motor functions. She cannot walk, talk, or do much of the "simple" things we all too often take for granted. Her parents, like so many of the parents here, are desperately campaigning for funding to get research going on this very rare and little-understood condition. Next week, their daughter will have her long, beautiful red hair all shaved off, and will have 6 holes drilled into her head, into which the doctors will implant new genes, in the hope of replacing those which have been degenerating at a rapid rate. Too little is known to even have estimates on how well this "therapy" will work, and if so, for how long. It truly is humbling, meeting all these families. When ever you think you have things really bad, you will always meet those who have it worse.

A constant reminder to be grateful for all the blessings we DO have in our lives. It's too easy to forget, at times, how lucky we truly are. TRUST. Have Faith. And never forget to have gratitude in our heart. Things could ALWAYS be worse.

May 22, 2003

He's Here!!!

Happy Birthday, sweet Wyatt!! Last night, at 5:50 PM, Wednesday, May 21st 2003, WYATT GEORGE BOEPPLE MATTAWAY entered our world with a loud and healthy cry!! He weighed in at 7 lbs. 12 oz. and 20.5 inches long! He looks very much like his paternal grandfather - his middle-namesake George Mattaway!

What an amazing day it was! Later today, either Bruce or myself will give a more detailed account of the events of yesterday, but I just wanted to take a moment to annouce Wyatt's birth, and let you all know that both he and I (mom) are doing ok. It looks most likely that Wyatt's first open heart surgery will take place tomorrow, but that is not yet finalized. We will be meeting the surgical team in a short while. There is much to tell you all, but for the time being, just know that "so far so good". He is here and he is alive. We thank you all sooooo very much for all the continued love, support, prayers, cards and packages. You have no idea how much your gestures lift our spirits and keep us going. We apologize that we haven't yet had a chance to phone or e-mail you personally, but know that you are all in our thoughts and hearts, and we will be getting around to calls as soon as we can.

With gratitude and love, Bea

May 23, 2003

Open Heart Surgery

Wyatt was taken in to O.R. this morning at 7:45 AM to be prepped for his Stage One Norwood Procedure. The head surgeon, Dr. Spray, met with us to go over last minute details. The one "extra" complication in Wyatt's case is that they discovered, after he was born, that his tri-cuspid valve is rather leaky. Dr. Spray informed us that this condition could not be addressed in this first surgery. The results of the surgery, if favorable, may take care of, or reduce, the implications of the leaking valve, but if not, Wyatt may be required to have a full heart transplant if the condition worsens. Aside from that, all looks promising for today's surgery. Only a 10% mortality rate is expected. We will get a full report hopefully a little after noon today.

PLEASE, folks... we need all your prayers and focus and positive thoughts as strong as you can send them.

With love, Bea & Bruce

May 25, 2003

Surgery Went Well

Just a quick up-date to let you know that Wyatt's first open heart surgery went very well yesterday. There will be a detailed account on our journal, when we get the chance. But he is back in CICU and doing very well, all things considered. The big challenge today is that he is being weaned off the ventilator, which has been doing all the breathing for him thus far. Very scary, as his saturation levels drop terribly low every once in a while, and he "forgets" to breathe (apnea) and starts to turn blue. But he is in absolutely amazing hands... the nurses here are beyond fantastic. Paul is starting to have a really difficult time with all that is going on, and it is really breaking my heart to have to tear my self away from either one of my babies. We will, as I said, give more details in our journal, but just know that all your prayers are working, as Wyatt is alive! Thank you!

Love, Bea

May 26, 2003

Breathing On His Own!!!

Wyatt has been totally off the ventilator for over 24 hours now, breathing all by himself!! His saturation levels (oxygenated blood) is holding between high 70's to mid 80's (which is good for an hlhs baby. Healthy hearted folks, that's most of you reading this, have saturation levels of 100, but again, for having only half a heart, he's doing really well. Danger is if it goes below 60 for too long).

Next BIG challenge is eating. They put in an NG tube (a long, thin tube that goes down through his nose, into his stomach)...boy did he ever HATE that!! They are giving him my breast milk (I pump every 4 hours) through the ng tube, but also attempted to give him my milk through a bottle today. It was very hard for him. As is often the case with most hlhs babies, Wyatt is having a really difficult time trying to breathe and suck at the same time, not to mention attempting to swallow. It takes so much of his energy, and he start to gag, cough and turn blue from lack of oxygen. You can tell how frustrated it makes him. It will take a lot of practice for my little guy, but he sure is trying! Such a brave little fighter, Wyatt is!!

Paul is doing a lot better, though it is very hard for him to see his little brother struggling so, and to have to be apart from us so much of the days (and every night). He is an amazing person, sweet Paul. He really is trying to process so, so much right now.

Oh, and if you are trying to reach us at the Philly Ronald McDonald House, we are in Room 37 (extension 137) where you can at least leave us a voice message, since we are not "home" very often. Bruce plans on writing a long and newsy journal entry some time tomorrow, for those who want the details. Keep those prayers coming, as they are working amazing wonders thus far!

love, Bea

May 28, 2003

Wyatt continues to progress amazingly!!  He has now been breathing all on his own for 3 days, and today they even took off the cannula (?) that was blowing in room air (mixed w/a tiny bit of oxygen to keep his saturation levels up) which was just to remind him to breathe.  They took off all the other wires and monitors, and now he only has: NG feeding tube (through nose into stomach), the empty IV's in his poor little hand (just in case they need to give him something) and a pulse sock to monitor his pulse.  Hooorrraaaayyy!!  He looks amazing!!  Really good color, and even his scars, big and many as they are, are already looking so much better.

Two half attempts of breast feeding today, but there was just too much going on in the room for either Wyatt or I to really concentrate, so we will try that again tomorrow.  He's doing much better with the bottle feedings, and what ever he doesn't take in, they feed him through the ng tube.  It's still quite a struggle for him to breathe and swallow, but he seems to be getting the hang of it more and more.  There even are rumours that he may be moved out of the CICU and into the "step down" unit as early as tomorrow!  One doctor even suggested that we may be going home this weekend!!  That news fills me both with such joy AND such Dread!!  What a scary concept... to take my little guy out of this super high tech and expert hospital where he is monitored by such skilled doctors and nurses around the clock... .. back to our home?  Absolutely astounding how well he has been doing.  Thank you all for your very powerful prayers, and PLEASE keep them coming.  We need to get him SAFELY home!
W/ love and gratitude...
Bea

May 29, 2003

STEP DOWN UNIT!!
This morning, our young little cowboy was discharged from the Cardiac Intensive Care Unit and moved down the hall to the "Step Down Unit"! From everything the docs are saying, it is looking very likely we will be coming home this weekend. I am terrified but will "vent" about my feelings in the journal. Aside from me and my emotions, this is very GOOD News!!

May 29 (Late afternoon)

Graduation Blues???

Ok, so our brave little cowboy is doing amazingly well. He has been doing everything he is supposed to do, and with flying colors. Things are moving so quickly, and today we were moved to the "step down unit", which is the transitional phase between the CICU and going home. Every sign points to our being discharged to go home this weekend. So I should be thrilled, right?

To look at me today, we start off with filthy, unkempt hair, no make-up, pale face, puffy eyes, won't even attempt to describe the milk producing portion of my anatomy except to say that I have everything in common with your average dairy goat (cows have 4 nipples, remember?). My shirt is stained with leaking milk, my pants have a huge poop stain (from attempting to change Wyatt's diaper on my lap while he was hooked up to a million monitor lines from his research tests being done today) and - for you parents out there - Wyatt is at the yellow/mustard color staagge of poop today. I am still quite sore from the stiches to my "tear", and am feeling even more exhausted (despite a rare, good night's sleep last night). Sounds like any mother of any newborn, right?

Well, Wyatt graduating to the Step Down Unit IS really good news. It means that he is stabalizing to a point that the doctors are getting us ready to take him home. Instead of all the 24 hour supervision and care that Wyatt was given in the CICU, here, we (the parents) are left mostly on our own, in charge of his feeding, changing, weighing, and we will be taught to work his NG tube, measure his ph levels, manage the monitors etc. As opposed to having his vitals checked every hour, he now will be checked only every 4 hours. We are in a semi-private room, where nurses only come in if you request for them, or are on their rounds. In CICU, there a nurse was right at his bed-side 24 hours a day. It is DRASTICALLY different, and I guess I am just in shock.

For several months now, we had been trying to prepare ourselves for the worst case scenario, and expecting to be here for 3 weeks post-op at the very least. We had read about so very many complications and difficulties that often arise with hlhs babies, and a stay of only 2 weeks or less seemed the exception, not the norm. Today marks exactly 1 week since Wyatt went through his first open heart surgery. He is only 9 days old as of 5:50 this evening. Given all he has been through, I can hardly belive the speed at which he is progressing.

Our biggest challenge right now is breast feeding. Today is only our second day at trying, and we still haven't even had one undisturbed attempt yet, as monitor wires keep coming off, alarms go off that scare him, people come in and out of the room, he makes a poopy in his diaper (which he hates worse than needles) and over-all it has been an extremely tense and stressful experiment for both of us. All things considered, this is a very minor set-back, and one that is extremely common with HLHS babies, so I am told.

Well, I need to rush back for Wyatt's 4:00 PM feeding attempt. Bruce, Joyce & George will be taking the Infant CPR class now (which I took yesterday) and Paul will hang out with me and his little brother for a while. Yes, I must always keep in mind how blessed we truly are, despite how my emotions are directing themselves!

Much love and gratitude for you all!
xoxox Bea

May 30, 2003

Our 3 1/2 year old, mister Paulie-poo-pooh, went on a "road trip" back to NY with his Nanny & Papa (Bruce's folks) this morning. He is going to see his cousin Sasha in Queens, and will most likely return to Bardonia on Sunday. This will be the very first time, since Wyatt's birth, that Bruce & I can concentrate soley on Wyatt, and focus on all we have to learn before going home ourselves. We still don't have a definite answer, but a Sunday or Monday discharge seems likely. Bruce & I still have to take the ng tube training and numerous other lessons, and there are some ph levels on Wyatt that the doctors aren't comfortable with yet, so we will have to wait and see. It really is an hour by hour, even minute by minute thing here. Another couple that was all set to go home today, suddenly had to return to NICU, as their baby girl started having breathing apnoea as soon as they were preparing to leave. You just never know.
Oh dear, forgot the time... have to go for our next feeding attempt... will do another update later.
Love to all, Bea

May 31 , 2003

DISCHARGE DATE SET FOR MONDAY June 2!!! We still have a class to take that afternoon so we might stay the night and return on Tuesday, but on paper, Wyatt is scheduled to go home in 2 more days!! Though now we have seen 3 babies who were all set to go home, suddenly have a turn around and ended back in CICU, there is no indication at this point that Wyatt should have unforseen complications, but, as the word states, things "unforseen" can always occur, so we need to stay vigilant and be patient, and continue to pray that we will have Wyatt safely home very soon. I can't wait for all our family and friends to finally meet him! Though still a bit nervous, I am now totally ready to get my this tiny cowboy back home and have our little family all together again. And to get those IV lines and monitors off Wyatt so we can have a real cuddle for once! Keep good images of us safe at home!
Continued love and gratitude to all...
Bea

June 1st , 2003

Wyatt continues to do really well. He's even getting much better at breast feeding, though very slowly, and it takes up so much of his breath and energy that he falls asleep after 10 minutes of trying. But he has the idea of latching on and sucking down pretty good.

What a difference it has been since Paul went home with nanny & papa. Though I miss him dearly, it's the first time Bruce & I have been able to devote ourselves 100% to Wyatt and learning about his care, and even getting in a nap or a short walk outside between feedings, pumping, changing and lessons. It's worked out really well for us, timing-wise, having Paul here from the beginning (4 days before induction) so we had several days to spend fully devoted to Paul, and then Paul got to be included and a full part of Wyatt's intro into the world, and about a week for Paul to get used to the idea of having a little brother, and now we all get a few days break before the big home coming.

We just took the first half of our ng tube training this morning, and, all things considered, things could be way worse. It's not a fun thing having to shove a tube down your screaming baby's nose, through his esophageus and down into his stomach, but hopefully he won't pull it out too often, and otherwise it only needs to be changed once a month!!

This morning, I was able to administer Wyatt's medications, test his stomach ph levels, administer his ng feeding, and flush out the tube all by myself. It really is not half as bad as it seemed at first. We look at it this way: at least we HAVE a living baby to be caring for this way. Though I get huge waves of grief, despair, anger and self pity a few times every day, overall I must admit that I feel a growing sense of awe and gratitude every time I look into Wyatt's eyes, or talk to our darling Paul. Our perspective on life and what really matters has shifted dramatically over the last few weeks, and I so many things that used to concern us seem so petty and trite now.

Never take life for granted. And remember what a miracle each of your children truly are. Things could ALWAYS be worse, and often, quite unexpectedly, you find that out.

We can't wait to come home, and look forward to seeing our friends and family really, really soon!!

June 2nd, 2003

Homecoming??!!

Finally completed all of our required training for Wyatt's home care. The only thing remaining is for us to actually take out and then re-insert his ng tube with supervision by a nurse. Wyatt threw up 3 times today, and he never threw up once until today, so that has to be watched tonight... but unless anything else develops, we are all set to GO HOME TOMORROW!!! Yeeaaaayyyy!! It really seems hard to believe, and in fact, I won't believe it till we are actually safe and sound, in our home at 17 Whispering Court. Feel free to call us once home, as we would love to hear from you. If it is not a good time for us to be on the phone, we will simply put the answering machine on, so don't be afraid to call. We've missed hearing the supportive voices of our friends and family!!
 

Please keep those prayers coming to see us safely home!

June 2nd (4:45 PM), 2003

NG Tube Nightmare....

Oh Lord... this is hard! So we had our training (on a peaceful, un-moving doll) and and it seemed simple enough, but trying to shove this long tube down Wyatt's nose and into his stomach? Forget about it!! In truth, we knew it was going to be hell. The two times that the tube had to be re-inserted since we were here, the nurses couldn't even get it in, and had to call a doctor to do it. Turns out that Wyatt's nasal anatomy is not designed in the "normal" way. Some kind of deviation inside his nasal passage, and when you try and insert the tube, you are met with all kinds of resistance. Needless to say, Wyatt screamed his head off in pain and fury, and was kicking and flayling his arms, legs and head, Bruce and the nurse together could barely keep him still why I gingerly attempted the insertion. A second nurse came in and tried, and said she met with resistance too, and finally the doctor had to be called in. My stomach was in knots from watching Wyatt's agony and I had to leave the room in tears.
I hate this!!!!!

June 8, 2003 , 2003

Finally Home!!

Sorry for the lack of up-dates... totally slipped by the way side. Yes, we ARE home now. Wyatt was officially discharged from the hospital on Tuesday (the 3rd) and we've been back home in New York for 5 days now. It's so good to be home, but it's also a time of HUGE adjustments. That would be the case bringing home any newborn, plus with Wyatt's particular needs, it's even more of a challenge. But the main thing is we are now home. Will fill in details later this week, but now we can be reached here in Bardonia.
As always, thank you for your continued prayers and support. Much love and gratitude to all...
xoxo Bea

June 15, 2003 , 2003

Happy Father's Day!

Well, we are slowly but surely adjusting to our new life at home with Mister Wyatt joining us. He is doing amazingly well thus far. Looking fabulous, breathing just fine. Only problem thus far is the feeding situation, which is very common, we hear, with hlhs babies.

Wyatt keeps pulling out his ng tube, and when he does, we tend to leave it out for the remainder of the day, as he is able to take from breast or bottle much better when the tube is out of his nose and throat. BUT... on his own, he just isn't able to take in enough milk to thrive. We hate putting the tube back in, but it seems to be a neccessary evil at this time. All things considered, it's really not so bad. But Wyatt does now have full fledged reflux, which we were told many of these babies do. So he is on Zantac twice a day. That, along with Lasix, (a diuretic, to keep his fluids down in order to lessen the work his little heart needs to do). And 1/2 a baby aspirin every other day (to thin the blood, also to lessen the work load for his heart).

Paul is a great "big brother" and really loves to hold Wyatt. It's a lot easier when there is no tube wires hanging off of him.

The big challenge for me begins as Bruce finally is going back to work this coming week. I will be on my own with Wyatt and Paul for the first time since Wyatt's birth. Paul will go to pre-school 3 days a week, and my mother-in-law has generously volunteered to come up every other Friday, and take Paul the other Friday's, so I will only have one day a week to deal with both boys on my own. I actually think it won't be too big a problem. Especially once we can get Wyatt to sleep at night, so we will be alittle more rested and not in an exhausted daze during the day.

Amazingly, thus far, aside from the ng tube and medications, we really aren't dealing with anything more than any other parents of newborns deal with. Considering what Wyatt has been through in his short life thus far, we really are very lucky. Again, we thank you all for your continued support, prayers and concern. And we give our heart felt thanks and gratitude to the amazing and wonderful mothers of RCNS (Paul's nursery school co-op) who have so kindly and lovingly been bringing us delicious home cooked meals for the past two weeks. You guys truly are the best! THANK YOU!!

With love and gratitude, Bea (Bruce, Paul & Wyatt too!!)

July 21 , 2003

Two Months Old!!

My goodness... I can't believe it's been so long since we updated this website! It's so hard to find the time, with a newborn and a 3 1/2 year old at home! But I just wanted to quickly let you know that our sweet Wyatt just turned two months old today, and he is doing absolutely amazingly well thus far!

He is almost up to 11 pounds, and is looking pink and chubby and healthy as can be! He still suffers from Reflux, and is still on the ng tube, but even I, his mom, can finally put it back in when he yanks it out!! Never thought I'd be able to, but it really isn't so bad any more. Even Wyatt only screams for a few seconds, just as it passes down his throat! Feeding-wise, we still feed him every 3 hours, and we start off most feeds by offering him my breast milk in a bottle, where he will take anywhere from 1 to 3 ounces (out of 4 ounces) before gagging or falling asleep. We then give him what ever he didn't finish through the tube. At night, we put him on a slow, continuous feed by ng tube pump from midnight to 6:00 AM so we don't have to keep waking him at night. This was the recommendation of his GI specialist, and it seems to be working in putting the weight on him!

Big brother Paul is absolutely fantastic with Wyatt, and is more of a help than a hindrance these days. And this week, Wyatt is just starting to smile, in actual response to seeing us! Such a delight!!

We see his cardiologist every few weeks (we have an appointment tomorrow, in fact), where they monitor his oxygen saturation levels, heart functions, weight gain, etc. and do an echocardiogram to see how much his tricuspid valve is leaking, etc. It is the cardiologists who will determine when Wyatt should have his second stage open heart surgery (usually some time between 4 and 6 months of age). That's not something we really like to think about at this point, so we focus on how well Wyatt is doing, how much he is growing, and how very blessed we have been so far!

I promise to work on getting some recent photos of our amazing little fighter up on our album page! Till then, we send prayers of thanks for getting Wyatt this far, with so much success!!

September 29, 2003:

Preparing for Round #2

 

Wyatt turned four months old on September 21st and is doing well.  We continue to be thankful for his relative good health and developmental progress as we move closer to his second open-heart surgery (bi-directional Glenn).  His heart function remains strong, with oxygen saturation levels steady at around 80% and only moderate leaking of his tricuspid valve.  His right ventricle thus far does not seem to be overworked or enlarged.  Wyatt is now 23 inches long and 13.0 pounds, up from 7 ½ pounds and 20 ½ inches when we left CHOP on June 3rd.

 

About a month ago, Wyatt stopped oral feedings completely and became totally reliant on the NG tube.  Prior to that he had taken roughly 50% of his daily volume of breast milk from a bottle, but the combination of the effort it takes his heart and lungs to breathe, suck and swallow all at once, the discomfort and pain caused by having a tube stuck down his throat and all the acid and vomiting from his Reflux finally got to him.  Over time he developed a major aversion to having anything, breast, bottle or even pacifier brought anywhere near his mouth.  We had been warned that feeding is often a major issue for babies with congenital heart defects, but we weren’t prepared for the rapid nosedive Wyatt’s oral feeding ability took, nor for all the stress that this caused all of us.  Thankfully, Rockland County has an excellent Early Intervention program, and now we have a Feeding Therapist coming to work with him for half an hour, three times a week.  As of this writing, Wyatt has just begun to regain a tiny bit of sucking ability, and we have also started him on tiny amounts of solid food from a spoon (avocado and banana each mixed with breast milk).

 

He still gets 99% of his calories via the NG tube (100 ml of breast milk every three hours augmented with Duocal supplement that adds about 30 calories per feeding).  At night we put him on a slow, continuous feed and he typically sleeps straight through till morning.

 

Wyatt gets 0.7 ml of LASIX twice a day to help prevent fluid build-up and ease the burden on his right ventricle.  We had also been giving him 1.4 ml of ZANTAC twice a day to help with the reflux but it really didn’t do much as he continued to throw up at almost every feeding.  As of last week, Wyatt’s GI switched him to Prevacid.  The doctor says that it typically takes about a week for the new drug to kick in but that she has great success with it with her other pediatric heart patients.

 

We are scheduled for his second open-heart surgery on Thursday, October 23rd, 2 days after his five-month birthday.  Our plan is to have Joyce and George (Paul & Wyatt’s nanny & Papa) come up to Bardonia on Monday, October 20th.  They will stay and take care of Paul and our dog Rozzy.  We decided to let Paul stay at home this time, so he can continue to go to his nursery school and have his play dates, and keep to as “normal” a routine as possible.   We will drive to Philly that day and check into the Philadelphia Ronald McDonald House. 

 

Wyatt will undergo various tests on the 21st, at which time we will donate blood to be used either at his operation or donated to the CHOP Blood bank.  On the 22nd, Wyatt will be admitted to the CICU, and will have a heart catheterization (a tube passed through veins in his groin up through his heart) to allow for a more accurate reading of the blood flow and pressures within the heart itself and to give his surgeon, Dr. Spray, more detailed information for the next mornings surgery.

 

 I’m not sure how we will find the courage to hand Wyatt over again for this surgery, but we don’t have much of a choice.  Ultimately, we realize that relieving his right ventricle from the need to pump to both the lungs and the body is a necessary step and if the outcome is good, he stand to gain so much more strength and a much higher quality of life.

 

Thank you all for giving our little cowboy your continued spiritual and emotional support.  We will update the site as often as feasible and remain optimistic that Wyatt has many lessons he has yet to teach us.