Our little HLHS Hero
|So I guess I forgot to post about T’s dental, cardiology and orthopedics appts…my brain has been functioning at low speed lately so bare with, LOLDental: T’s teeth look great…no damage from all the different meds he took for so long or the sweeties he lived off of for nearly a year J his dentist does not want us weaning the binky till after surgery-go figure, she was extremely pleased with how things looked and T actually cooperated (mostly) Cardiology: very good visit and T cooperated for EVERYTHING: weight, height, O2 & BP check, exam, EKG AND his ECHO- he is usually a turkey for at least one of these… anyways everything looks GREAT!!! The Dr.’s had a long debate over T and to no surprise; they agreed that T is following his own path and not the usual, again!!! LOL- normally the requirement for the 3rd stage surgery is once they get to 15 kg (33 lbs) well T is there BUT he is there earlier than most kids…usually heart kiddos have issues with gaining weight, but T is SOLID muscle, the kid is like a MAC truck, I swear he is made from titanium LOL which isn’t much of a surprise as he is such a super man to begin with!!! J Anyways T is doing SO AMAZING; but they can’t go off the normal guidelines, they need to base his surgery time on his entire size not just his weight. As T is only 2 and weighs more than most 3-4 yr olds with HLHS but is the average size of a 2 year old they are a bit hesitant to chance that he isn’t quite big enough yet… he did say that their records show that T has the past 2 years had a HUGE growth spurt between June and October and he figures he may follow that trend again this year but even if he grew an entire foot they are going to wait. So after lengthy discussion it was decided that we will be postponing surgery till spring… this will give T a chance for his left lung vessels to grow in hopes of reducing his risk of developing severe pleural effusions and chylothorax, a common complication after the Fontan. Him having bigger and stronger lung vessels can help reduce this risk for several reasons, of which I won’t bore you with J
T has his next follow up the 1st week of Feb 2013 and at that appt we will set a surgery date for sometime in Feb., March, or April, or very possibly later… They refuse to do his surgery this fall even though they are confident size wise he will be ready. They won’t risk it during the high RSV/Flu season; otherwise he would probably be getting it in October. Kaine said he wasn’t willing to risk T’s health since he knows he will be fine till early next year. His surgery date will be based on several factors: how many RSV/flu hospitalizations there have been by Feb, on whether Dr. O’Brien will want another cath, which Dr. Kaine is advising against-he doesn’t see the need as his cath in May went so well and everything looked as perfect as it can-, on T’s health over the winter, and our preference as well- right now we are trying to decide if we want to do it before T’s 3rd bday or after- not really sure if there is a “better time” to hand your little boy over so they can open his chest and stop his heart but regardless it isn’t a choice we have the luxury of refusing.. No matter when we decide it will be hard!
Orthopedics: T was evaluated and instead of jumping straight into leg braces they are going to start with inserts in hopes that it will correct T issues..; for those that didn’t know, even though T can walk, run, jump etc he has a severe turning in his feet- on his right foot he almost walks on the side of his foot. It doesn’t seem to bother him but to me it looks extremely painful. There is a slight chance he could grow out of it but we didn’t feel it was something we should chance and we are also concerned of the long term effect it could have on his ankles, legs, and especially his knees! His inserts will be here in about 2 ½ weeks and then he will be stuck in shoes ALL day- but I don’t see a problem as he LOVES to have his shoes on.
Overall things are going well. T is doing amazing… we also had a big debate over starting to take T to church… luckily we have an amazing church and some volunteers (that we haven’t met yet) that are going to help with T. There will be some training but we will have someone with T that is dedicated just to him during any service-so they can monitor him and the health of the children around him and remove him from any possible health risk and ease our minds about exposure!! This will give Sean and I a chance to attend together services together instead of alternately weekly… kind of nervous but excited cause this is a first step to so many more for us… as scared as I am for his surgery in a way I am anxious because I know that after so many things will be changing for the better!!!
Thanks for continued prayers and I hope everyone is doing wonderfully!!
Friday, June 08, 2012, 6:00:26 PM | firstname.lastname@example.org (Sean Molby)
First off, I would like to say thank you for everyone who has been praying for us and for all who have been continually supporting Tristan through your prayers. It really does mean so much to our family.After being recently informed of some things I feel the need to clear the air a bit, even if only for my own piece of mind…Very few people know of the real struggles we have been facing over the past two years. Tristan has been the most prominent but not by far our only struggle.
To begin, let me apologize for anyone who feels I have not been the optimal friend or family member lately… I truly do not mean to be rude or appear self involved. But to explain let me start by stating the obvious-In April of 2010 our infant son was born with HALF A HEART, not to be mistaken or confused with a premature baby (although I understand and agree that is truly devastating and scary in its own right, but you eventually take your child home-and most often they go home healthy), or having a child with a scraped knee, a broken bone, or even one with a really bad cold/flu -my child has half a heart, he will always have only half a heart-until he needs a transplant and then he will have a transplanted heart! Unless your child is diagnosed with something that will be life threatening for the REST of their lives, please don’t compare what we are going through. So with that explanation I apologize for not taking the time to make a call to see how anyone’s day is going, again I am not intentionally being discourteous, but when Tristan was brought home I spent nearly every waking (and often even sleeping) hour taking care of him, in addition to taking care of Ella, Bri, and our home..In his first few months of life I had to not only monitor him every minute but he had to be fed hourly; he also required medicine to be administered every 4 hrs. Then after his second heart surgery and the complications that arose after, I had to do meds every 2 hours plus check vitals along with everything else. Now after his third heart surgery I will admit his medication needs dwindled drastically but then I had to focus on his therapy. Cause at 7 ½ months he was only as advanced as a week old infant-literally. Not only did he get therapy daily (occupational 2x, physical 2x, speech, and nutrition)-and still does; but I did therapy myself with him three-four times a day for at least 30 minutes a day EVERYDAY; on top of that, to prevent yet another surgery, I spoon fed him 40 ounces of formula a day (to break it down – that’s equivalent to FIVE 8 oz glasses of milk, that had to be spooned into his mouth for months until he was able to finally start eating baby foods and we eventually taught him to drink from a straw, he never took a bottle. To accomplish this I had to feed him almost every 30 min and it took about 15 minutes to get him to take the amount of fluids he needed-so as far as how my time was spent, you do the math. At night, instead of sleeping, I would monitor & watch him sleep and constantly get up just to make sure he was still breathing. I maybe got 3-4 hours of broken sleep a night for well over a year. So to be honest after being eternally exhausted and spending what time I wasn’t taking care of Tristan with either Ella or Bri or picking up the house (if I had enough energy to pick up) I really didn’t have time to make a quick call to see how you were doing. And frankly, now that things are much more calmed down with Tristan I have kind of assumed no one was really interested in talking to me because throughout all we were going through only ONE person called me regularly to check and see how we were doing. And we got a call maybe once a month by one or two others. I understand because we all lead busy lives, but please don’t make me feel guilty or like a bad person simply because I truly didn’t have time to talk but instead remember that obviously neither did you because although my phones receives calls, I never got any. The past two years have been loneliest I have ever had. We were in a new home, with no local friends, no church we belonged to, and a very sick child. I can count the number of visits people have made on two hands-and only 9 people (5 of them only came up once) ever visited us during our 4 hospital stays (which totaled over 110 days) -except for when T was first admitted. So the support hasn’t been rolling in. It has been hard and lonely to do it all ourselves but we have truly appreciated all the prayers so please don’t think we don’t…but it would be nice for someone to come over just to give a hug!
With that cleared up I would like to address something else. I am VERY aware that we live in an extremely nice home in an extremely nice neighborhood. It wasn’t an accident we chose this home. We loved it, we still do but the fact is we signed papers on the house BEFORE Tristan was born, BEFORE we knew about his heart, BEFORE I had to close my business and could no longer work, and BEFORE we realized we would lose close to $3000 per month in income! So when we got this house our being able to afford it was NOT an issue. We are more aware than ANYONE how devastating our financial circumstances are, as we have struggled daily. I have NEVER discussed fully what we have been through but to make matters a little more understandable I will now. We are going to lose our home-unless some miracle happens. We have had to surrender two vehicles in order to make ends meet; I know some may ask well why not move, well put simply it isn’t that easy. Not only do we have to keep in mind how much it would cost us to move (until recently, although that just fell through- we had no way of coming up with a deposit and a first and last month’s rent -which is required anywhere) and although I won’t go into details, there are other considerations as well. But despite how difficult it has been we have made our house payments on time. We have not ONCE asked for anyone to give us money nor have we received any-except twice as explained below. We have not asked for assistance in any way to help us out whether with utilities or food or anything else, there have been NO fundraisers at any time for T’s or our benefit. Although we have never asked I don’t want to exclude the times we have received help: our wonderful neighbors provided meals for us for a few days after T’s second surgery and a church that knew about T sent a box of food over for his first Thanksgiving. For T’s first Christmas my dad’s work threw a party in his honor and raised some money. From that and with some money given by 2 friends on behalf of their Bunko group was the only way we afforded T’s 1st Christmas and gifts for our other children. We have also received a few donations from others, mostly people we have never met but each has been truly appreciated and has provided for our kids in some way. All of these were unexpected and never imagined but we are eternally grateful for.
I am not angry or upset nor do we ever expect anything but I am hurt. So please don’t judge us because of circumstances that HAVE BEEN out of our control. We do not spend money frivolously as we don’t have any to spend. We don’t go on trips. We don’t go to concerts. Sean and I don’t go on dates nor go do costly outings with our kids. We can’t afford name brand or even off brand clothes for our kids. They get hand me downs and deals I find on craigslist. They do have tons of toys but remember I RAN A DAYCARE-so we had the toys before T was born.
Yes we did get extra money from a side job last year but regardless of what anyone thinks we spent the majority of it on past due bills and just trying to catch up, we did buy the kids’ Christmas-and we spent less this year than ever-aside from last year). We had to use some of it to get a vehicle because we knew we could no longer afford the one we had. We spent maybe 5% of it on unneeded things like getting take out a few times and getting some stuff to help get organized and then the rest went to taxes and groceries. We have spent more times in two years than I can count trying to juggle the bills we have with the income we don’t. I don’t always know how I am going to feed my children and many times I don’t eat so they can. But I don’t complain and I won’t. Because despite all odds and against medical reasoning, medical standards, and statistics our son is alive and healthy and our other kids are doing great as well. But I CAN hope for things to get better and for something to happen to turn things around, I think I have earned that hope!
So regardless of what you think you know and despite everything, we KNOW we are going to have to find alternate housing. I really don’t need anyone making me feel guilty because of the home we are in now. We KNOW we have to move but we don’t know HOW we are going to do it, we also KNOW that we are going to have to move into something smaller and we have no problem with that we are just trying to find something that will allow us some peace of mind and room to grow and pray fervently we can find something that we can stay in as our kids have been through more than enough. Briahnna has sacrificed as well and has earned the right herself to not have to wonder if she is going to have to leave her friends again.
After T’s upcoming surgery we can start considering me working by doing a small daycare and I am beyond anxious and excited… I want my kids to be able to play with friends and I want to be able to help provide financially for our family but that’s a few months out yet. So please don’t judge and assume all is well just simply because of where we live now and because I don’t complain and beg for money constantly.
Again I am not angry or upset but I am hurt. I have dedicated every year since Sean and I married but especially the last two years to my family. It is not by accident that Tristan is doing so phenomenally well. We have worked really hard to get him where he is and to keep him healthy. To do that we don’t go on fun shopping sprees or even window shopping trips, T has never been to the mall. We don’t get to take a break and go to McD’s playland and play or any other play place, Tristan has never been to an indoor play park of any kind. I don’t just run to the store really quick if I need something, I wait for either Sean or Bri to get home and then I go if Sean can’t and I still need it, T has never been in a grocery store. He has never been in a church, he has never been to family functions, nor do we take him to school functions, we don’t risk his health just because I may be stir crazy or something sounds really fun.. I limit my own exposure as well because it just isn’t worth it to me/us to possibly bring something in and get T sick. I don’t judge or think ill of anyone who does do those things we just feel that it isn’t in T’s best interest to be exposed to those environments and risk his health and because of that he hasn’t had any major colds and hasn’t been hospitalized aside from his surgeries and caths. We have been very fortunate but we have also been VERY careful!
Now don’t misunderstand, we by no means live unhappily. We take walks, and we go to outdoor parks if the weather permits and there aren’t a lot of kids, we go to the zoo, or other outdoor activities. We try to do fun things as a family. During the summer there are tons of things we can do-the winter it is a bit harder. We do go to the farm occasionally as long as no one there has been sick. Ella is mostly limited to what is safe for T but Bri gets to do quite a lot with her school, church, and other stuff.
I am not writing this intending to make anyone feel badly or even to get sympathy. But after a couple of conversations I feel I needed to explain what our life has really been like. Not what those may assume it is like or even possibly been told its like.
I have been in constant tears and heartache especially the last couple days-well weeks really and this is the only way I could think of to clear the air. Whether anyone actually reads this or even cares is secondary. In fact, I am sure those that need to read it won’t but I have explained with hopefully a little more detail than we have given in the past what our life is like so that maybe some can understand….
Thank you all for your constant prayers for Tristan, please do not misunderstand and think they are unneeded, unappreciated, or unwanted because they truly mean the world to us!
We still continue to be grateful for all the blessings we have received. God has truly been with our family
Thanks again for any support ~Christy
Wednesday, June 06, 2012, 7:17:32 PM | email@example.com (Sean Molby)
|Okay, so sorry I am just now getting this out; but we all have been sleeping for the better part of two days, LOL.. since I didnt sleep at all Monday night, and Sean didnt get very much himself, and being so stressed and worried Tuesday, it took its toll.. we got home Tuesday around 4pm and T and I went to bed and slept til 8pm. Got up and scrounged for food then went back to bed around 10pm and slept til 10am.. T ate a HUGE late breakfast, finally got his appetite back, and then went back to sleep for another hour and then stayed up til bedtime…Tristan Molby is doing great, pretty much back to his normal self, doing everything he used to but just sleeping a little more but I think all the anesthesia has finally worn off! We wont hear back from Dr Kaine til either next week or the week after.They will present Tristan at the Friday cardiology conference and then discuss the next plan of action. Kaine said the Fontan will either be this summer or they could push it back as late as early next spring; but only because he isnt quite the ideal weight.. the optimal weight is 15 kg (33 pounds) and T is 13.9 kg.. but he still has a couple months of summer to gain. Then they will weigh in the risks and benefits of doing it this summer vs. waiting a few more months…
so for now we wait. But thankfully T is doing phenomonally well!! He is such a trooper! 🙂 Thank you everyone for all your prayers and support. It means the world!!!
Tuesday, May 29, 2012, 11:09:48 AM | firstname.lastname@example.org (Sean Molby)
|We just talked to Dr. Kaine, No intervention was needed!!! He is doing great, his left Pulmonary Artery was a little smaller than his Right, but is profusing his left lung well! so they are not going to work on it. They will present Tristans case at confrence within the next two weeks and discuss a date for his Fontan. Dr. Kaine said that Tristan is one of their poster childeren for HLHS kiddos with the Hybrid preceedure! We should get to go home today 🙂 I will follow up later, thank you for your prayers!!!!|
Tuesday, May 29, 2012, 11:02:05 AM | email@example.com (Sean Molby)
|Just recieved word that they were done and Dr. Kaine will be in here to discuss the outcome in 30 minutes! Wow that was fast! Hopefully that means no interventional work needed. Stay Tuned…..|
Tuesday, May 29, 2012, 10:22:43 AM | firstname.lastname@example.org (Sean Molby)
|T is finally back in the cath lab… There were several delays -for some reason they didn’t have a nurse to check him in, then everyone came at once so we had me, Sean, T, Dr Kaine, the cath lab nurses, the charge nurse, anesthesia, plus a couple of Dr’s that wanted to stop in and see T all in a little 7×7 room…with everyone talking at once (that was interesting)!! then they forgot to order his Versed, and then we had to wait for it to take effect (Sean has a hilarious video) but T was in good spirits and acting all goofy when they wheeled him back…
Now we wait
Tuesday, May 29, 2012, 1:31:07 AM | email@example.com (Sean Molby)
|Hello Friends, Sean Molby here and I am once again requesting prayer for my son Tristan Molby, He is an amazing little boy with HLHS and is scheduled for a heart cath this coming tuesday. The power of prayer is amazing and I firmly believe that without it, Tristan would not be here today. The Cath is in preperation for his third Staged Surgery called the Fontan and this will be performed in the coming months. Please add Tristan to your prayer requests also please share/repost on other prayer boards and as always thank you and God Bless. ~ Sean Molby|
Sunday, May 13, 2012, 10:58:00 AM | firstname.lastname@example.org (Sean Molby)
|Today is a celebration of life, Tristan has overcome all odds and continues to thrive! I would like to dedicate this post to my amazing wife Christy Molby, without her commitment and sacrifices I firmly believe that Tristan would not be in the same condition as he so happily is right now!!!! We LOVE you MOMMY!!! If your reading this today (Mothers Day) then please take a moment to celebrate life with your mother, your family and remember to take nothing for granted, as we so often do. I love you all and God Bless!!!! ~Sean Molby Please check out the main page, I have updated with a new photo album of Tristan’s “First Two Years” and please play the Brad Paisley You Tube video “It’s a Hard Life” while viewing the photo album. (scroll down for the video)|
Tuesday, January 17, 2012, 11:51:02 PM | email@example.com (Sean Molby)
|sorry for not getting this up Sunday as I intended Where to begin……. After over 6 months, and an amazingly miraculous 6 months at that, I am not really sure. There has been so much that has happened. Currently I am laughing and crying. Sounds silly I know but there is a reason. Anytime I do a new post, I generally reread my last one so as to not repeat what you already know- and yes I know I still repeat things J but it had been since last June for our last update so I really wanted to refresh my memory of all that has happened AND… well after reading it, I cried. It sometimes astonishes me that that was our very own life; it seems so unimaginable, even though we lived it! I can only laugh that I am crying over it. AGAIN! That last June post is going to be a hard one to top so I am not going to try. LOL BUT I will let you all know what has been going on
I guess first off I can start with T is doing beyond incredible, the advancements he has made in such a short time are mind-blowing. In fact, I remember sitting at the computer last year at this time trying to stay positive and optimistic and that wasn’t always the easiest thing to do. It is hard to watch your child that you love so much need so much help because he was literally helpless.
From last January to June T had made huge strides.
But from this past June to now he has made not strides but entire continental leaps, LOL… there just isn’t anything this kid can’t do, except for maybe never give up!! He has such personality and is just an amazement to watch daily. J <insert loud sigh> I still worry and I am still scared but I am also still incredibly proud!! J
Last June T had just learned to crawl and he spent an entire day practicing (on his own and by himself, might I add) learning to stand by himself… It was the funniest thing ever to watch especially since he refused any and all help I offered. But after about 4-5 hours he was a pro and after that it took him less than a week to figure out how to walk by himself- remembering back it was hilarious to watch him because he wouldn’t take small tenuous steps, like one might think! Nope he wanted to get in as much as he could as fast as he could- he was making up for lost time!! So once he balanced himself he would take off in a complete sprint to get as many steps in as he possibly could before falling flat on his face- and then he would sit up with the most amazing grin on his precious little face. He was doing it his way, and he thought his way rocked!!!
By then end of June he had the walking thing down and of course that wasn’t enough so he just kept at it… I could go week by week and month by month for the past 6 but I will just summarize by saying he has definitely conquered being a toddler!!!
He walks, runs, jumps, climbs (ON EVERYTHING), slides (off anything he can before he gets in trouble: i.e. couches, stairs, chairs, beds-LOL the list goes on). He dances (his all time favorite thing to do), he climbs the stairs by himself (I always walk behind him), and he can go down them himself (but I never really let him). He signs, talks, sings, and yes screams!! J. He has such a personality and loves it most when he can make you smile!! He is the biggest little daredevil! Nothing scares this child! AND HE LOVES to do anything that a mommy would deem dangerous!!!
He is finally just your average normal little 22 month old boy-with the exception of having only half a heart!!
But what a heart it is! Dr. Kaine has been brought speechless with all that T has accomplished! The little baby boy that no one thought could; has managed to baffle em all!! But even T has his limits and those include the need for his upcoming procedures. L Kaine has pushed things back as long as he was able but T will have to go in this up coming April 19 for his first medical procedure in what will be 17 months, a heart catheterization and then a couple short months later (hopefully) he will have his final staged procedure, the Fontan. It will be T’s fourth heart surgery and I am SCARED TO DEATH!!!
Right now T is doing beyond great! He is right where he is supposed to be or even past! He is in the 50% for height and weight -almost 30 pounds and nearly 3 feet tall (27 lbs 4 oz and 33 inches long those measurements where 3 ½ weeks ago). He is where he needs to be on all the charts for OT, PT, and speech! And he has the most AMAZING personality EVER!!!
So it is very scary to think of all that we can lose by even just one tiny thing going wrong… This time for surgery I am not handing over my sick baby boy hoping they can make him better. This time they will be taking my perfect little warrior and I can only hope and pray that no one screws him up! Its not that I don’t have faith in his Dr.’s I absolutely do. If I didn’t we would be traveling 100’s or even 1000’s of miles to other Dr. It is just there are so many variables and so many things that can happen. And that is scary…just scary!
But we are all holding on to the hope that T has made it through so much and overcome things that most can’t even imagine so he will make it through this next step too!!!
The next few months are going to be very hard for us. Preparing yourself to hand your child over to basically strangers, knowing that they will be doing a procedure on his heart is not something you can come to terms with or even really accept but for us it is just something that is… I have never been allowed back with Tristan when they are prepping him for a procedure but since meeting other heart families I have learned that other hospitals allow a parent to be there until the anesthesia has taken affect and that is something I plan on discussing with them. I honestly don’t think they are going to get him out of my arms any other way… His last surgery the nurse literally had to peel my arms from around him, and as she did I felt like she was ripping my heart from my chest. Letting him go was so hard and this time it will even be worse and to be honest I don’t think I will be able to do it the same way we have before so hopefully they will allow me to walk him back and stay until he falls asleep-please pray that they do!
On a side note (kinda)
I recently was talking to my grandma, just about life in general, and she reminded me of some things that happened when I was younger and how back then she had refrenced one of Garth Brooks songs “Unanswered Prayers”. When she spoke to me decades ago she said how sometimes God answers your prayers in ways you will never understand, maybe not until many years later, or you may possibly never get to understand them in this lifetime. And I didn’t understand then! But my grandma was right, as was good ol’ Garth.J My point of this is, it got me to thinking that whenever you are pregnant and people ask what do you want, a boy? or a girl? Most answer I just want a healthy baby… In fact, that is how I answered! “I just want a happy healthy baby, it would be nice to have another boy, but I will be happy with either”. When T was diagnosed, I thought my prayers had not been answered…and at the time I couldn’t imagine why God would do that to us..to me, hadn’t I already been through enough in this life? But it has been over 22 months and as I look at Tristan I realize.. my prayers WERE answered. No, maybe not exactly as I had planned it out; but I DO have a beautiful and healthy baby-he just has only half a heart, but with that half he has shown us how to live with all of ours…I love him more than I could ever imagine… I love all my kids. I love them equally. But Tristan has finally made me whole! If he had been born differently I would not be who I am today. Nor would Sean or the girls. He has taught not only us but countless of others.. he is our Unanwered Prayer!
For now we are going to keep on as we have for the past several months. Enjoying every moment and each and every smile and all the orneriness that comes with em J
I would greatly appreciate it if everyone could please continue to keep T in your prayers. Although he is doing amazing he will never stop needing all the love and support that everyone has offered! Thank you all so much
Hugs to you all~ ♥Christy