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June 14, 2011- a look at the past...

posted Jun 14, 2011, 5:01 PM by Sean Molby   [ updated Jun 14, 2011, 5:49 PM ]

Disclosure: Please bear with this post. It is the longest I have written but a lot has happened over the past year and I have tried to summerize it as best I can.. I have a few reasons why I wrote the things I did. One: I have had several people ask what it was like in the beginning for us as they have come to know T only recently. Two: As much as this website is to keep everyone updated it is also, in a way, a journal for me, a way for me to express what I am going through. There has been a lot going on in the CHD community of late and because of that I felt the need to not necessary relive the past year but more like get it all out at once (well at least as much of it as I could). And this post has helped me do that. There are other reasons but those are the main two

This is what our life has been. What our life will now always be….


Can you think of a time in your life that literally everything you had ever known was changed in a single moment? A time when your life, as you knew it, was to come to a dramatic end as a new way of life was being forced upon you! A new way of life you never could have imagined. A way of life you never thought would be yours. In our first few days at CMH, I had someone hand me a poem of sorts, this is the link as it is too long to actually type but I ask that you take the time to read it as there is no way I could have said it better myself: and I have also learned that it apples to more that just living with a child with a disability, it can be applied to anything anyone has ever had to go through that wasn’t necessarily by choice.


(without reading the poem you will not understand some of this post or this next phrase)


Welcome to our Holland, we LOVE it here:


Four hundred and thirty days ago today I was told my newborn son was going to die. That is what the nurse said at OPR when they finally came out to talk to me about why I could not go and see my son in the nursery after waiting over 45 minutes for someone, anyone to come and talk to me. That is the day I first heard the term Congenital Heart Defects… now she didn’t come right out and say it like “he is going to die”. It was more subtle. The exact words were, “Your son, Tristan (she repeated it like that, as if I didn’t know who she was talking about) we think he has a very serious heart condition…we are preparing him now for a transfer to Children’s Mercy but I need you to know that he is really, really sick and there may not be much more they can do for him” You would think that after more than a year you might forget the words your birthing hospital said to you, but those are words that will be forever etched in my brain. Along with the first sight of Tristan when they first took me back to see him after she had told me that. I remember all too well his lifeless little body laying there pale, grey. He had barely a pulse. No movement at all was coming from his tiny little body. There was a nurse with a bag over his little face breathing for him, another pushing on his chest. Machines were buzzing and beeping all around him. There were dozens of people in that room that morning but all I can really remember is Tristan, watching as the little baby boy that I carried inside me for over 9 months with never a moments rest, my womb his own personal kick boxing ring, laying there as close to death as you can get without actually dying.


Can you imagine what it is like to have NO ONE look you in the eye for WEEKS as you ask how your baby is? Asking constantly, is he going to be okay? No one willing to answer as you beg for them to tell you what’s going on? Is he going to make it? That was basically our life for 15 days. Just over two weeks. Doesn’t seem that long of a time when I actually count it out but then, at that time, it was an eternity.


Four hundred and fifteen days ago I held my son for the first time since he was diagnosed with Hypoplastic Left Heart Syndrome and as I held him they were (gently) preparing me to understand that it may be the last time I held him alive. His heart surgery was to be that next morning-even though he really wasn’t as ready or as stable as they wanted him to be. He was that sick, that fragile but they HAD to do his surgery-they were running out of time. Even though the day before he had a collapsed lung, a week and a half before he had had seizures and two weeks before he had gone hypoxic and was deemed severely critical, imagine the fear as the Chaplin had already been called in three times for Tristan (that is the last step when something is wrong. CMH calls in a Chaplin when they are expecting a child to pass away within hours). But like I said, they had to do his surgery or they would lose the chance to do one at all.  A lot of people don’t know, and why would you, but the staged surgeries for HLHS babies and other CHD babies are very time sensitive. I don’t really understand why myself; but I know this because that is what I have been told. That if they wait too long, surgery is no longer an option. You would think they would go ahead and try but nope, if the child misses their window the only option you have is passionate care- which is where you just sit and watch your child slowly die.  So there I was holding my son for the first time in 2 weeks, refusing to believe it would be my last. Holding nearly every tear I wanted to desperately cry because I refused to let Tristan think that I didn’t believe in him.

May sound silly to you but I felt, still feel, that as long as T only heard or felt happiness around him and as long as we could all hold it together when we were near him that he would fight harder. (Note: I cried more than you would deem possible when I was not with him-I cried myself to sleep more nights than I can remember) But I wanted I needed T to know there was something to fight for! Again I am sure to some it sounds ridiculous; but that is the one thing I could give him. I couldn’t hold him. Couldn’t feed him. Couldn’t bath him. Couldn’t even change his diaper. I couldn’t do anything that as a mother I should have been able to do BUT I could prevent anyone from bringing, I guess what you could call, “bad” energy around him. As far as I was concerned if I could hold it in so could everyone else. No one could talk negatively, no one could be sad. I could not do much for my son in those first few weeks but I could do and give him that!


By pure miracle Tristan made it through that first surgery and even surpassed expectations by being the quickest Hybrid recovery they had had to date! (that info was more impressive before I learned he was only the 4th Hybrid CMH had done…but hey we take and accept all accomplishments no matter what)! Although he recovered wonderfully from his surgery, after that a new concern arose. Tristan was having difficulty remembering how to eat. I am blessed in the fact that I at least was able to nurse T for 2 whole days. A lot of CHD moms don’t get that- you see they don’t want our babies to eat before their first surgeries so instead they get their nutrition from TPNs and lipids (IV nutrition). But after a month of not eating and being on a vent T had a hard time figuring it out again. And just when we thought he had figured it out, they did an OPM (swallow study) and he failed- at the same time another new problem was developing, T had started to have blood in his stools. As Sean and I (and most of T’s nurses) fought with the resident doctors on the best course of action for T he was fighting another deadly disease, without our knowledge. T contracted Necrotizing Enterocolitis, commonly known as NEC, and the infection had seeped through his intestinal wall and infected his blood. NEC in itself has a rising mortality rate of 25%. T’s heart condition has an overall mortality rate of 50-60% (this percentage is based on the overall outcome of HLHS infants.-each surgery has its own mortality rate and then they have a mortality rate for in between surgeries -it is a forever list of percentages and statistics. For each stage a child goes through their chance of survival gets higher. But it is a very sad fact that over half of HLHS babies do not make it to or through the third surgery). Now for those that don’t know, NEC is a deadly bacterial infection of the intestines more commonly found in an already ill or premature infant. But again T defied all odds by not only overcoming it but having a negative blood culture after only ONE day on antibiotics! But we still had to continue with the treatment and stop all intestinal nutrition. That meant no food, no water, no meds, no anything was to pass into T’s tummy or intestines. So back on TPN and lipids and IV meds T went for 11 whole days. It was like torture for him because he then knew and understood what a full belly felt like and we had to watch as he suffered through the feeling of starvation for almost two weeks.   


The next obstacle we had to hurdle over was the issue of NG (the feeding tube down his nasal passage to his tummy) vs. getting a G-tube (a feeding tube directly through to his tummy). With all that T had gone through I felt beyond apprehensive about him going through yet another procedure and was not comfortable with the thought of them doing a G-tube surgery. Sean and I discussed it thoroughly one night and agreed we did not want the surgery we didn’t feel it would be safe for him to have it at that time. However the residents had other ideas and had no interest what so ever about our concerns on T’s well being nor any concerns with our hesitations. They would not listen to reason about T being too weak to undergo anything more. They would not listen when we said we would reconsider in a month or so but for now we just wanted to give T time to heal and recover, both from his heart surgery and from NEC, of which he had just overcome. They tried to use scare tactics and statistics, I guess thinking that we would be too naïve to do our own research and too un-medically educated to know what was best for our son. They tried to use statistics and scare tactics to get their way, CMH is known for that-a sad fact and one I am working on amending. They even went so far as to try to get Sean to sign a consent form while I was away from the room as I flat out refused-

Don’t misunderstand; I fully understood what their concerns were. I completely comprehended why they felt the need to do the G-tube but the thing they did not understand was I felt with EVERYTHING in my being that things would go drastically bad if we went through with that procedure at that time. Now you have to understand and know that throughout my entire “normal” pregnancy I felt something was wrong, I didn’t know what but I felt something was not right- I was a nervous wreck to have T. Then when he was born I asked almost hourly “what is wrong with my son” and I was always told he was just fine. (despite all the signs he had saying otherwise). But despite their reassurances that he was fine, it was perfectly normal for some infants to be like that. I just felt something was wrong- I didn’t push it at first cause I didn’t want to cause problems, I didn’t want to be ‘that’ type of patient and when I finally did become the patient that would not listen to petty reassurances it was almost too late. So from the moment we found out about T’s condition I promised myself and him that I would not doubt or remain silent again. I would fight to the death, literally, for my son. I would be proud to be “that” type of patient (or parent)! So when I felt beyond uneasy about another procedure (again every ounce of my being was telling me it was not a good idea)–this time I listened and I fought. Thankfully the surgical team agreed with me- (and no, I did not talk them into it. They were not even notified of my concerns). But now, suddenly it was ok to take T home with an NG tube. Something that only two days before we had been told would most likely kill him was suddenly okay to do since a surgical team had the exact same reservations that I did. Talk about frustrating.


So exactly three hundred and sixty four days ago today I got to take my 68 day old infant home for the first time without having a clue as to how long I might get to keep him.  

I brought home my baby. My baby that had only half a heart. My baby that I had to feed through a tube, keep attached to monitors all day and give oxygen as needed. I had to give medicines and check vitals, I had to count wet diapers and check for bloody stools. I had to not only be a mom; I had to now be a nurse too.

Mom training I had, been through it three times. But a nurse? I had no clue what I was doing. I was scared to death. What if I did something wrong? What if I fed him too much, too little? I had to give meds every 4 hours, what if I slept through a dose?  What if he stopped breathing in the middle of the night. What if his heart stopped? Would I be able to do CPR like they had trained me, would I even remember how? These are all the things that went through my mind. Not just daily or hourly, but these were constant second to second thoughts … the worst constant thought of all…what if I fail?


It wasn’t like if you fail a test or fail or do bad at your job. If I failed the worst possible outcome would happen. If I failed I would lose my son. I could even have lost him if I didn’t fail. That was just as scary.


Now fast forward three hundred and sixty four days. A lot has happened in between that time but today Tuesday, June 14, 2011, the tears I now cry are for a different reason entirely. Somehow, despite all the odds against him, Tristan is here with us still. Alive and most amazing of all, thriving! He is our miracle. Our medical anomaly! He is our eighth wonder of the world!!

To date he has been diagnosed with HLHS, gone hypoxic, suffered through seizures, had a collapsed lung, been through 3 heart surgeries (2 by-pass), he has had a completely obstructed pulmonary artery (reason for heart surgery #3),4 cath procedures -1 that nearly killed him from massive loss of blood (+2 that have been cancelled-because he is doing so well there was no need to do them), he has survived NEC, had failed extubations (to the extent of being bagged for over 45 minutes because they were having difficulties re-intubating him), overcome a failed swallow study, has had clotting problems, difficulty learning to eat or drink. We have had to worry over being a failure to thrive- a common issue for heart babies, and there have been countless other smaller issues that we have dealt with along the way. At the beginning of this year, January 2011, Tristan couldn’t sit or even hold himself up independently; he could barely do it with assistance. He could not drink from a bottle or a straw or even a cup. He was off the NG but he was spoon fed EVERYTHING (formula included), he didn’t roll, he couldn’t crawl or walk. He couldn’t even bear to put weight on his legs. To put it mildly my 9 month old baby was no more advanced than a 2 month old infant. The only thing he could do was babble and smile. BUT boy could T smile.


And that smile is what pushed us all to keep trying; to not give up. To keep believing he could do it! It is hard as a mom to watch as your child struggles to do so much. To sit back and not feel it is your fault he is so underdeveloped, even though you know logically it isn’t. You still wonder if you are doing all that you could. I wish I could take credit for all that Tristan has overcome but the most I can lay claim to is never giving up on him. Never settling for less than I knew he could give and do; and today T can do it all!!! LOL, well almost all. He not only drinks from a cup,  he feeds himself. He is crawling, standing, talking, walking (with help) he is not only NOT a failure to thrive he is on the charts. At last visit he was 24 pounds and almost 31 inches (2 inches of that he grew in under 2 months)! He is a daily amazement and with all that we have been through I can now say he is also the average 14 month old child. The only difference is at 14 months he has been through what most could never even imagine. I can honestly say he is my hero, my inspiration-quite an impressive title for someone who doesn’t even know what peeing in the toilet means.


This past year has shown and taught me more than the 30 some years before it ever did. I have learned unforgettable and invaluable lessons and I have met some amazing people along the way. I have cheered as other heart babies (and families) have reached their own milestones and I have cried and screamed as too many others have lost their battle despite the love and prayers being showered down upon them. It is beyond humbling to be reminded daily of all you have to be grateful for. I will never fully understand why God chooses to take some of our warriors before we are ready to let them go and allows others to stay despite the odds against them. I am one of the lucky ones and I don’t know why. Now that T is doing so well, I have had more than one doctor/medical professionals be brutally honest with me by saying there is no medical reason Tristan is still with us. I have actually had them tell me that by all medical standards and statistics he should never have made it to his first surgery let alone through his second and none of them even considered the possibility of him being were his is and doing as good as he is today!


We still have a long journey ahead of us- in fact, we have barely even begun walking this journey we have started. There is still so much T will have to go through, so much he still has to overcome. I don’t know what it is but I know that God has plans for him. God has unimaginable plans for Tristan and I could not be more proud to know that HE entrusted T to me. I don’t know why he thought I deserved him. What I did to be rewarded with such an awe inspiring gift but I was; and despite all that we have been through I wouldn’t change that for the world.  


I know that there will never be a night that passes that I will not fear will be our last with Tristan. There will not be a single morning that I will not pray that we be allowed so many more. There will never be a time that he sleeps that I will not wonder and worry if he will just stop breathing. There will not be a single day that I will not fear his heart will have reached its limit and stop. There will not be a single moment that goes by that I will not have fear for my son. But with those fears also comes the blessings. I also know there will not be a single night I go to bed ungrateful for all I have been given. Not a single morning I wake that I will not be reminded of what miracles there are in the world. There will not be a mile stone reached that won’t be met with enthusiasm and awe. A simple smile can remind me of what so many others take for granted. With this new world we have been given, there is not a single moment that I will not appreciate even in its simplicity. Not many people can lay claim to that.


I guess the point of all this is: Everyday is worth living to the fullest, even the really bad ones-cause they make the good ones even that much more! I feel I have, I suppose you can say earned the right to say that, as I have lived through the unimaginable and not just with T. I have lost in finance and made major wrong career choices. I have spent days and nights wondering how we would make it through. I have suffered greatly because of death. It has taken one of my children (my first), my (biological) father, a father-n-law, my grandfathers, grandmother, my uncle, great uncles, aunts, a few of my friends, and pets. I am no stranger to death and the anguish it brings. I know the feeling of complete loss. The anger it brings and the sorrow. The years of mourning and wondering what if…I will never be able to understand, at least not in this life, why. But I do know we all live with loss and regret. It is an unavoidable part of being human, Some people have it so much better than you while others may have it worse.……Regardless of what life you have been given the most important thing to remember is, it is how we choose to live with the loss and regret that really defines us. We can forever wonder why and be angry over what has been lost or taken or never even been given…or we can learn and grow from every heartache, every obstacle. We can chose to resent or always regret the fact of never going to Italy or we can learn to take a new appreciation of being given the chance to go to Holland…
  ........Enjoy your Holland, what ever it may be, and realize how blessed you are to have been given the vacation at all-

♥ love and hope, always... Christy ...I have included a couple of pics of Tristan and a 15 sec video of Tristan taken today- they each show why I love and appreciate Holland way more than I ever could Italy!

Sean Molby,
Jun 14, 2011, 5:24 PM
Sean Molby,
Jun 14, 2011, 5:24 PM
Sean Molby,
Jun 14, 2011, 5:24 PM