HomeCURRENT UPDATESStatus Updates (Archive 2011)

Status Updates (Archive 2011)

DSCN0606

June 14, 2011- a look at the past…

‎Tuesday, ‎June ‎14, ‎2011, ‏‎7:49:02 PM | smolby@gmail.com (Sean Molby)                        

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 twoThis   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: http://users.erols.com/jmatts/welcome%20to%20holland.html 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!

April 8 2011~ Tristan is ONE!!!

‎Wednesday, ‎May ‎25, ‎2011, ‏‎1:23:32 PM | smolby@gmail.com (Sean Molby)

HaPpY   1st BiRtHdAy TrIsTaN dRaKe MoLbY

(   sorry I am a couple weeks late getting this updated—okay now I am almost 2   months late but I did write this back in April )

Well   we made it. It has been a long, unnerving, scary, yet happy year and T made   it to his 1st Birthday and is doing amazingly well. I am sorry I   am so late in posting this but the past month and a half has been busy. March   was not the best month for us as we ALL got sick. Tristan got his first cold   and with it a double ear infection… twice. We had lots of doctor visits and a   couple of ER visits but he is finally on the mend and doing much better. In   fact the first healthy weekend we had was on his birthday so that was a nice   little extra gift!

He   has made so much progress in the last couple of months. In the blink of an   eye he went from my baby boy to my little man… he has worked so hard and   accomplished so much that I can hardly believe it! I remember him back on New   Years Day still so fragile and weak. He couldn’t sit up by himself, was still   having difficulties eating by mouth. No rolling or floor movement and to put   him and keep him on his tummy was literally an act of God. Now just over   three months later our little miracle has shown us again just what he is made   of.

I am   amazed and proud to say that in 3 months time T has managed to accomplish   what takes most other kids almost a year to achieve. He can not only sit up   by himself but he can almost pull himself up. He rolls EVERYWHERE and does a   cute little military crawl, butt scoot, or hops (yes he literally hops on his   butt) to get where he wants to go. The little turkey can start out by his toy   box and I turn my back for a sec and he is across the room with a huge grin   on his face.

He   still has some fear or anxiety of putting certain types of weight and   movement around his incision sight but with 3 open heart surgeries before he   was 8 months of age, I think gives him the right to be a little sensitive   about that area. He can stand on his own (as long as he is holding on to   something- he still doesn’t trust himself yet- and LOVES to do it… a great   feat from not even being able to have any weight bearing on his legs in   January (or for that matter even February) and boy does he talk up a storm.   His favorite and first word was Mom, and that is exactly how he says it Mom,   it’s really cute. He says dada, and diaper-when he wants his diaper changed.   He says water and love you, and of course NO- but that one he just shakes his   head no but trust me he KNOWS what it means!!! So he has most the important   ones covered. Briah insists he says her name but I still have not heard it   LOL!

His absolute favorite person in the world is Ella which is rather frustrating   considering all I do for him J, no seriously he loves his big sis- doesn’t   matter how bossy she is to him or what toys she takes away if she asks for a   kiss she ALWAYS gets one and no one can make him laugh like Ella-who lovingly   calls him her Tristan! I can’t leave out what a wonderful big sis Briahnna   has been too. She does an amazing job with both Ella and T and the sacrifices   she has had to make and willingly continues to make just astounds me. I am   just so proud of all the kids and all they have accomplished!

Looking   forward to the next couple of months to see what else T will conquer! We are   headed to FL in mid May for Caleb’s graduation so wish us luck. I am pretty   nervous as this will be the first time T will be out of the house (aside from   surgeries) let alone out of the state! We have a cardiology appointment right   before we leave so we can make sure all is as good as can be!

I   added a 1 year picture of T!

Until   next month! Thanks to you all for you love and support we definitely would   not be where we are today without it! ♥Christy

Tristan’s 1st Birthday

‎Wednesday, ‎May ‎25, ‎2011, ‏‎1:11:28 PM | smolby@gmail.com (Sean Molby)

HaPpY   1st BiRtHdAy TrIsTaN dRaKe MoLbY

(   sorry I am a couple weeks late getting this updated—okay now I am almost 2   months late but I did write this back in April~ LOL )

Well   we made it. It has been a long, unnerving, scary, yet happy year and T made   it to his 1st Birthday and is doing amazingly well. I am sorry I   am so late in posting this but the past month and a half has been busy. March   was not the best month for us as we ALL got sick. Tristan got his first cold   and with it a double ear infection… twice. We had lots of doctor visits and a   couple of ER visits but he is finally on the mend and doing much better. In   fact the first healthy weekend we had was on his birthday so that was a nice   little extra gift!

He   has made so much progress in the last couple of months. In the blink of an   eye he went from my baby boy to my little man… he has worked so hard and   accomplished so much that I can hardly believe it! I remember him back on New   Years Day still so fragile and weak. He couldn’t sit up by himself, was still   having difficulties eating by mouth. No rolling or floor movement and to put   him and keep him on his tummy was literally an act of God. Now just over   three months later our little miracle has shown us again just what he is made   of.

I am   amazed and proud to say that in 3 months time T has managed to accomplish   what takes most other kids almost a year to achieve. He can not only sit up   by himself but he can almost pull himself up. He rolls EVERYWHERE and does a   cute little military crawl, butt scoot, or hops (yes he literally hops on his   butt) to get where he wants to go. The little turkey can start out by his toy   box and I turn my back for a sec and he is across the room with a huge grin   on his face.

He   still has some fear or anxiety of putting certain types of weight and movement   around his incision sight but with 3 open heart surgeries before he was 8   months of age, I think gives him the right to be a little sensitive about   that area. He can stand on his own (as long as he is holding on to something-   he still doesn’t trust himself yet- and LOVES to do it… a great feat from   not even being able to have any weight bearing on his legs in January (or for   that matter even February) and boy does he talk up a storm. His favorite and   first word was Mom, and that is exactly how he says it Mom, it’s really cute.   He says dada, and diaper-when he wants his diaper changed. He says water and   love you, and of course NO- but that one he just shakes his head no but trust   me he KNOWS what it means!!! So he has most the important ones covered. Briah   insists he says her name but I still have not heard it LOL!

His absolute favorite person in the world is Ella which is rather frustrating   considering all I do for him J, no seriously he loves his big sis- doesn’t   matter how bossy she is to him or what toys she takes away if she asks for a   kiss she ALWAYS gets one and no one can make him laugh like Ella-who lovingly   calls him her Tristan! I can’t leave out what a wonderful big sis Briahnna   has been too. She does an amazing job with both Ella and T and the sacrifices   she has had to make and willingly continues to make just astounds me. I am   just so proud of all the kids and all they have accomplished!

Looking   forward to the next couple of months to see what else T will conquer! We are   headed to FL in mid May for Caleb’s graduation so wish us luck. I am pretty   nervous as this will be the first time T will be out of the house (aside from   surgeries) let alone out of the state! We have a cardiology appointment right   before we leave so we can make sure all is as good as can be!

Until   next month! Thanks to you all for you love and support we definitely would   not be where we are today without it! ♥Christy

March 8th 2011- home and loving it

‎Tuesday, ‎March ‎08, ‎2011, ‏‎9:43:58 PM | smolby@gmail.com (Sean Molby)

♥♦♥ HAPPY 11 month Birthday   TRISTAN DRAKE!! ♥♦♥WE LOVE YOU SO MUCH!Wow,   what a month we have had…Tristan is doing really good. Right now he has a   cold-his first one ever so I still feel blessed that we have not had to fight   with additional illnesses on top of all his heart stuff. Both Ella and T had   high fevers for about 3 days and now are trying to work through some   congestion. I am going to take T into the Dr. again tomorrow mainly because   we have to be really cautious and make sure his congestion doesn’t move down   into his lungs and cause pneumonia-which is often fatal for heart kiddos. He   is still growing good. Last visit he was 28 ¼ inches (it is really hard to   get accurate readings on infants so it fluctuates up and down often) and 21   lbs 12 ounces! The little chunk. Now that he is older he will not gain as   quickly as before so 1-2 pounds a month is good which is what he is   averaging.His   OT is going better. He was even taking a bottle again-then he got a sore   throat so we are working back up to that again. But he is still taking   everything by mouth and doing good, so I can’t ask for any more than that! He   is eating lots of table food now. Baked sweet potatoes, cheese burgers,   cooked carrots, all sort of crackers and cookies, noodles- he really LOVES   food so we are having no problem with introducing him to new things- he will   try ANYTHING! His favorite is now malt-o-meal- and he eats a full serving of   it-I have no idea where he manages to fit all the food he eats!

He   was doing really good with his PT but when he started not feeling good he started   not being as cooperative L but hey I don’t really blame him and he is still   making progress. His new favorite thing to do is rolling from his tummy to   his back. He has been able to do this since he was about 4 months but just   refused to…now he thinks it is fun! He is standing now with support either   him holding on to something or someone holding him. Still no crawling but   that one is going to be hard since he still HATES to be on his tummy.

He   has an amazing personality, always seems to be laughing or giggling. He   adores his big sis Ella- all she has to do is say hi and he starts giggling   hysterically and that just prompts her to make him laugh more. He is talking   up a storm and says mom, and dada, and it sounds like he says Bri. He also   says bite and love you and of course “NO” J

He   is finally off of his Lovenox shots and we couldn’t be happier! The first   couple of days after we were done he would look at us during meds time like   “so where is the one that hurts?” poor baby, he stopped doing that but it   made me feel so sad for him to know that he hated getting them so much!

I   have been busy with planning the fundraiser and trying to get our house   organized and clean-which is never ending! The fundraiser is going good. It   will be June 11th (although there is a chance it will be changed   to June 25th ) either way it will be at the Blue Springs (north)   High School as more details get finalized I will get more out. I truly hope   everyone who is able comes! It is for a great cause. All proceeds will be   split between CHD research, Children’s Mercy cardiology, Ronald McDonald   House, and I will be accepting submissions from local CHD families who are in   need of financial help. You could not imagine the financial hardship that CHD   families go through, especially during the first few years-medical expenses   are only a small part of what we have to struggle through. So I am really   hoping to help out some families and have a chance to give back in   appreciation for all that has been done for us.

We   are also now preparing for Tristan’s 1st Birthday- one month from   today! It is such a miracle that he is still here with us and I am so excited   to be able to celebrate his first year of life and finally give some people a   chance to finally meet him face to face!

For   now I need to get the kids to bed. Please keep T in your prayers we are   barely even started in his journey. Thank you to everyone for all the support   you have shown.

♥Christy  

January 29, 2011~ slow but steady

‎Saturday, ‎January ‎29, ‎2011, ‏‎2:35:24 AM | smolby@gmail.com (Sean Molby)

This   month has been somewhat bitter sweet. A   lot has happened since the last post. To start, I will say that Tristan is   doing very well! He is making more and more progress every single day. I can   not begin to express what a true warrior he is. He amazes and humbles me. And   I am more proud than I could have ever imagined being! It   has been a rough couple of weeks as both Sean and Briahnna have been really   sick. Sean had some sort of stomach virus and poor Briah got sick on her   birthday L and turns out she had strep. Fortunately we have seen nothing from   Tristan or Ella that indicates they were exposed and surprisingly I have not   gotten it yet either but I am definitely keeping my fingers crossed and   spraying the ENTIRE house with Sanox (it is similar to Lysol-but   better). It helped that Briah quarantined herself in her room and made sure   she wore a mask anytime she left it-poor thing, cause those masks are very   uncomfortable! They are now both finally on the mend and things are slowly   getting back to normal.Physical   therapy is going really good. He is starting to put more pressure in his   legs/feet so he is standing longer every session. Jaci will be bringing a   stander for him to try next week. It is suppose to help him with his strength   and balance. She is confident that we will need it for less than a month   before he gets the results she is hoping for, so that is good and exciting   news. T still hates being on his tummy but we are pushing him more and more   so that he can start to be more mobile. The little turkey still refuses to   roll over even though we all know that he can; BUT I have a feeling that   won’t last much longer because he is so inquisitive and he loves to play and   gets really frustrated when he can’t get to a toy he wants. He is already   reaching out and putting himself on his tummy he just gets so mad after he   does it that he forgets he wanted the toy… LOL J but I know he will figure it   out, I don’t have worries there. He is already doing so awesome and is barely   2 months out of recovery from his last open heart by-pass and since he had   his other one barely 12 weeks before that I think he has earned the right to   just take things slow!Occupational   therapy is going a little slower. We started his two sessions a week so   Nicole can work on his oral eating and motor skills. He is doing really well   with his motor function and there are really no concerns there but he is   still being a little stubborn when it comes to drinking from a bottle or   sippy cup. Nicole is ordering a new cup that is just a regular type cup but   has a controlled flow since T loves to drink out of big boy cups. Our hope is   that he will take to this and then he can stop having to be spoon fed his   breast milk/formula. I think this cup may actually work but even if it   doesn’t I don’t really mind spoon feeding everything-I would do anything to   avoid him having to go through yet another surgery. We are also wondering if   his stubborness may be from the fact that he is teething and since he already   has an oral pain aversion from being intubated for so long that may be why we   are having issues. Tristan now has two teeth on bottom and four teeth on   top-the four on top all popped out within a week of each other, poor baby!

He   is eating and gaining weight as usual. He is just over 21 pounds and about 28   ½ inches now. That is one area we have never had problems with, thank God! I   know we are beyond fortunate as most heart kiddos have major issues with   thriving. We have started trying more and more table foods and of course T’s   favorite is still homemade oatmeal chocolate chip cookies but he is really   starting to likes Oreos too. J For those of you that don’t really know me you   can not imagine how hard it is for me to give him junk food-neither one of   the girls even knew what sugar was until there 1st birthday but I   will give him anything if   he just shows interest in eating it and he definitely has a sweet tooth. He   also likes sweet potatoes and HM chicken noodle soup. J

Overall   T is doing wonderfully. However we have had a very difficult passed two weeks   as we have lost several loved ones. A very difficult loss for me was my Uncle   Dave, who passed away on Saturday, January 22 from a heart attack. He was   only 51 years old and it was a huge shock to our entire family. It is   especially hard for me as I was really close to him growing up. He had, this   passed year, moved down to Las Vegas where the majority of my mom’s family is   and because T is still so fragile I was not able to go down with everyone   else during this difficult time. They all understand but it is still really hard.   I am proud to say however that in honor of my Uncle Dave-as they are positive   this is what he would have wanted-my family to my surprise told me that they   will be directing donations in lieu of flowers and such to be sent to the I.HEART.TRISTAN.FUND . This is such a blessing especially as we have begun   preparing for the CHD fundraiser that I am coordinating that will be in April   of this year.

I   am so anxious to give back to Children’s Mercy, help out some MUCH needed   research studies, and then to also be able to assist some local CHD families   who are struggling that ANY amount received will be greatly appreciated! It   will also help to get the ball really rolling with the fundraiser- of which I   hope EVERYONE local can attend and those not local will at least consider   donating! This will be the first of a yearly CHD awareness fundraiser that I   plan on doing. (k, done with my advertising plug).

Sadly,   in addition to my Uncle Dave we have lost eight more little angels to a   Congenital Heart Defect over the last two weeks, and these are only the ones   I know about from the many heart friends I have been blessed to meet and who   are traveling beside us in this journey with Tristan. It saddens me more than   you can imagine growing close to these wonderful people and then morning with   them as they lose a part of their life to such a deadly disease. It also   keeps a constant reality check as we are always aware of how fortunate we are   to still have Tristan despite the odds against him. Tristan is a fighter but   so were all of these other precious babies- and as heart wrenching as it is,   sometimes even if these angels have more determination than most, a strength   that astonishes us, and are being sent all the prayers in the world, it is   still not enough to get them passed the difficult situation they were born   in. It is so hard to say how proud we are of Tristan, which we are, but still   have to face another parent who was just as proud of their warrior who is no   longer fighting their battle with CHD. It makes me feel as if I diminish the   fight their child struggled through. So if anyone whose warrior is now an   angel is reading this please know that I mean no disrespect as I praise T for   all of his progress. I can only imagine how difficult it is for you. Please   know that I respect all that you have been through and am amazed at the   strength you provide to all of us who are still fighting despite your loss.   You are all heroes to me. And your little angels are so lucky to have been   blessed with you as a parent.

Until   next post hug your kids tight tonight…. and every night. Don’t miss a   single chance to tell them how much you love them and how very special they   are to you. Life is never what you plan but it IS what you make of it. PLEASE,   MAKE IT COUNT! ♥Christy

January 18 – Here is wishing everyone a wonderful NEW YEAR!

‎Tuesday, ‎January ‎18, ‎2011, ‏‎4:48:00 AM | smolby@gmail.com (Sean Molby)

The   New Year has brought us even more than we could have expected thus far.   Tristan is doing remarkably well given all that he has been through and all   he still has to face. We have lots of plans and so much going on and I love   every minute of it.Today   marks 2 months post op from T’s last heart surgery. And for the most part you   would never guess it. Tristan is doing so well and has progressed so much,   even over the last 3 weeks. His home therapy re-evaluation was last Friday   and amazingly T reached ALL of his projected goals from his last eval. The   next 6 months will be some big mile markers for Tristan and we are expecting   quite a bit from him. Our new goals are for him to be eating table foods,   crawling, standing (he still won’t place any weight on his legs), and   drinking independently from a sippy cup. Seems simple but he still has a ways   to go.He   has grown so much in the past few months. He is now about 20 ½ pounds and 28   inches. He still is eating all orally! And the G-tube has “officially” been   taken out of the picture. He had his cardiology appointment last Wednesday   and Dr. Kaine was beyond happy! Along with saying there would be “NO G-TUBE”   he cancelled Tristan’s March OPM (swallow study) which was something that was   kind of making all of us a little nervous, only because T has certain ways he   likes things done and is not so cooperative if they are altered outside of   what he is comfortable…that being said we were really nervous that if he was   not comfortable at the swallow study he would not do well and then we would   be back to arguing about how things should be done, I was not looking forward   to that so I am thankful that is one thing we will not have to deal with   again!In   addition to that wonderful news, for the first time EVER for T they were able   to get a clear view of his left pulmonary artery during his echo. This is   HUGE…because of this view and what we could see they have taken his next cath   procedure off the table as well. He will have to have one sometime in the   future but for now he will remain hospital and surgery/procedure free for   hopefully the remainder of the year. I can not begin to explain how much of a   relief this is. I wasn’t concerned so much with the cath procedure as I was   Tristan’s response to being re-hospitalized and how it would set him back in   recovery. BUT thanks to our awesome echocardiogram techs who kept searching   until they got a perfect view we no longer have to worry about it.   WOOOOWHOOOOO!!!! J Also,   he will be officially off of his Lovenox shots on March 2. CAN NOT WAIT!!!!   The results came back from his genetic screening for genetic blood clotting   issues and everything came back fine….no genetic cause for concern. Thank   goodness! And he only has one more level to be checked and as long as it   comes back normal he will not have to have anything drawn again. NO MORE   BLOOD DRAWS!!!! Now that is something to celebrate J

So   now are big concerns now are OT/PT/nutrition. He still won’t take a bottle   and the little he was taking he now refuses. We are thinking this is because   he is teething and he is now associating his teething pain with the   bottle-URG….he is still taking what he needs by spoon so I am thankful for   that and he is starting to take water from a sippy cup and Nicole, his OT,   got him to take his milk from the sippy cup last visit so that is progress.   Right now I don’t care how he takes it just as long as he takes it. He is   doing so much better at eating now. And even had his first oatmeal chocolate   chip cookie last week…to our amazement the little pig ate the whole dang   cookie and LOVED every bite. I included some pics attached to this posting he   was so fun to watch. Now every time he sees a cookie he thinks he has to have   it, IT IS WONDERFUL!!!! We will start introducing some more table food later   this week. Mainly just cooked carrots, sweet potatoes, avocado, bananas, and   other similar foods, let’s hope he likes them J

His   physical therapy is going good as well. He now sits up by himself and for   long periods of time, in fact most of the day. He finds it quite entertaining   that he can play with his toys and reach out to grab them all on his own, he   enjoys it so much the little turkey is getting horrible at taking his naps   cause he does not want to stop playing. He still won’t roll back and forth   from tummy to back and vice versa-he can, he just won’t but he is tolerating   being on his tummy better. He is still kind of sore from his last surgery so   we don’t push him farther than he is comfortable. He still will not put   pressure on his feet but when Jaci does some leg stimulation he will stand   assisted for a couple of minutes. She is looking into getting him some stuff   to assist him in that and is hopeful that after only a few weeks of I guess   what you could call “standing therapy” that he will be doing it with out the   aide of equipment (fingers crossed).

Nutrition   wise we are working on him taking actual table food and having that be the   majority of his diet. It will take a few months but he is so far enjoying it   and now fights to feed himself and gets very frustrated at me when I won’t   just give him his bowl of food to eat all on his own. LOL I think he would   gladly spoon his milk all over the place in an attempt to do it all on his   own. I know have to start his meals with two spoons. One for me to feed him   and one for him to try and feed himself, I can’t help but smile and be so   grateful that he is doing so wonderfully well.

Overall   we are very happy with were Tristan is and although he is not “age   appropriate” in development if you make the needed adjustments for the all of   his hospital stays and surgeries and such he is far more advanced than he   should be…they flatter my ego by saying it is cause I work so diligently with   him but as much as I would like to take all the credit it is really Tristan   who is the one who deserves it. He is such a determined little boy and it is   his determination that has gotten him surpassing, by all standards, what they   never thought for him would be possible! I am constantly amazed and awed by   how strong of a little man he is. He has made me the proudest mama in the   world, all my kids have. Despite all that my kids have been through they have   been amazing and there could never be a prouder mom than what they have made   me! I have been truly blessed.

The   biggest news of this year is I am organizing a fundraiser for CHD research   and awareness. It has been a bit overwhelming but I am beyond excited and I   have recruited some wonderful heart mom friends to help me out. There are no   set details as of yet but there will be soon and I hope all of you will show   as much support with this as you have will Tristan these past 9 months. This   cause is so important and the money raised will benefit thousand of babies   just like T.

Again,   I can not thank you all enough for all of your thoughts, prayers, and   friendship. As scary as last year was I am looking forward to what this   year’s future holds.

Bug   heart hugs to you all ♥Christy

Status Archive 2010

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2013: molby.us, All Rights Reserved | Webdesign by Redefine-Life.com | AdminLogIn | WebMailLogIn