CMH Hybrid Stage One

August 18 -6 days till surgery

‎Wednesday, ‎August ‎18, ‎2010, ‏‎1:44:41 AM | smolby@gmail.com (Sean Molby)                        

Tristan   had his appointment with cardiology Monday and it was a rather stressful and   fairly traumatic appointment. For those that don’t know Tristan has not been   feeling too good lately. He has been congested, runny nose, possible   sore/irritated throat, no fever (thank God) but he has been pretty fussy and   has refused ALL oral feedings. I contacted the hospital last week concerned   and wanting to find out what I should do, as they had wanted to do his   surgery on Monday, August 16th –though that ended up falling   through. Needless   to say calling the hospital turned out to be a bad thing because Tristan’s   nurse was out and so I had to contact the cardiology clinic in an attempt to   get through to his cardiologist. The nurses there gave me the run around and   I ended up speaking with someone who turned out to be new, well she decided   INSTEAD of contacting Dr. Kaine (Tristan’s cardiologist) like I was asking   she contacted surgery….HUGE mistake, they then took her interpretation of   what I was saying and cancelled all possible surgeries for Tristan for the   next FOUR WEEKS. That would not be such a big deal if Tristan would be strong   enough to survive that long, however he is not. His first stage procedure is   rapidly expiring and if surgery is not done soon- in the next 2 weeks he will   no longer be a candidate for surgery and they will simply provide comfort   care until he is no longer with us.

THIS   IS NOT A POSSIBILITY FOR ME. Sorry, but Tristan has not fought this hard and   over come so much to just give up now. So, I was rather freaked out and   incredibly pissed off when Dr. Kaine informed me that because I told surgery   that he was severely ill they refused to do surgery, especially since I did   no such thing. Thankfully it all got straightened out, kind of. I explained   that we tried to get a hold of him last week for info on what we should do   and signs we should look for; assured him that I didn’t know what was wrong   with Tristan just that he is not acting normal and that is why I was calling   and that he at no time has had a fever or other signs of severe illness. Just   the runny nose, coughing, etc, which I said could still be a symptom from   being intubated, or possibly allergies, or we had even discussed the slight   chance that he may be teething. I told him I just didn’t want them not   knowing what was going on when we have such an important surgery coming up.   We then all found out about the other nurse contacting surgery and so on and   so forth. Anyways, after a checkup and reviewing Tristan’s case Dr. Kaine   personally contacted his cardiac surgeon and discussed the emergent need for   Tristan to have surgery now,   as his echocardiogram is showing a significant decrease in pressure in the   valve that started showing blockage just a couple of weeks ago-meaning it is   closing and at a faster rate than is safe- and assured him that he did not seem to have any   respiratory infection that should cause any difficulties with surgery.   Luckily Dr. O agreed and they decided that the complete need for surgery ASAP   outweighed the slight risk of Tristan feeling somewhat off and grumpy. Cause   without the surgery he WILL die but with it he has a chance.

Sooooo,   surgery day is now fast approaching. It is scheduled for this Tuesday, August   24 at 7:30 AM- Tristan’s will be the only surgery for his cardiac surgeon   that day.

This   is a terrifying scenario for a mom, to know that my baby boy is going into   open heart by-pass surgery. I have cried more in the last two days than I   have since he was in the hospital the first time. To have to go through all   of that again, I am not going to say I can’t do it because I can and I will.   I will do whatever it takes to help Tristan through this but it is very hard   and heart wrenching to know what he will have to go through at only 4 ½   months of age. This will be his most critical surgery.

It   will be long (6+ hours), it will be invasive (they are doing 2 ½ procedures   as opposed to the normal second stage of just 1), and it will be dangerous   (he is younger than most who go through the 2nd stage and in a   sense weaker)

I   have to believe that God has brought him this far for a reason and it is not   to just give up on him now. He has to make it through this next hurtle.

I   can not imagine not tucking him in every night for bed or waking up to his   beautiful smile every morning, or not watching him smile up at his sisters as   they talk to him and play with him. He is more precious than words. So sweet   and perfect and just wonderful. He is such a joy-I hate that he has to go   through this, if I could trade hearts with him I would in a millisecond. It   is so not fair that an innocent baby has to go through this. Being at the   hospital I saw so many little ones fighting for survival. Amazingly I watched   as these tiny little wonders fought through what most of us can never   imagine, they have more strength and determination that seems possible; and   sadly I watched some not make it, and I cried with their parents as they   passed on.

I   would like everyone to do me a favor. After you get through reading this, the   first chance you get, I want you to go to or call your kids, (and other   people you love) and tell them. Tell them how much they mean to you. Tell   them what they   mean to you. And don’t just tell them today, tell them often. So many times   we take for granted the days we have. Don’t waste the ones you have. Cherish   them and your kids. Give em a hug and tell them how wonderful they are for no   other reason than for them to know how proud of them you are and how loved   they will always be!

And   if, when you’re done, you could get down on your knees tonight and again   Tuesday morning and pray for Tristan we would be forever grateful. All your   prayers got him through last time and he needs them even more now. Please if   you are a church member ask your congregation to pray for a safe and   successful surgery this Sunday. Light a candle, do whatever it is you all did   last time. If we have as many people praying for him this time as we did last   April –May he will feel it and he will fight because he will know how much we   are all rooting for him! I believe this with all my heart.

Thank   you everyone for everything and please, please pray! ~ Christy

Aug 16 4:30am

‎Monday, ‎August ‎16, ‎2010, ‏‎4:32:12 AM | smolby@gmail.com (Sean Molby)

cant   sleep so figured I would do an update since I didn’t get a chance to Friday.   Surgery has been post poned as Tristan got sick… no big alarms as of yet.   It only seems to be a minor cold but he needs or rather has to be at 110%   before heading into this next surgery. He has another cardiology appointment   tomoorow so they can take a look at him and then reaccess him. It   did go well when they presented him at the Friday cardiology conference.   Everyone was in agreement that he is ready for his next stage, minus the cold   of course. They are extremely happy with his growth and developement.

Due   to his cold his occupational therapy has been slow because he has a sore   throat and refuses to swallow anything…but we keep trying! We have some   pretty good goals set up for him over the next few months. OT agreed that he   should be taking 50% of all his food orally w/in the next 6 months , as   surgery will likely set him back a month or two that is still a realistic   goal (whenever these babies go into the hospital for a prolonged stay they   generally regress 1/2-1 month per week they are in the hospital). PT would   also like for him to be sitting by himself and moving, whether by rolling or   crawling to reach a desired toy. Again this is w/in 6 months. They are being   optimistic as Tristan is already doing so well. Much better than he should   be. He is already sitting barely supported for several minutes!!!!

It   has been a long week as most everyone in the house is not feeling to swell,   not sure how we all got sick but luckily it hasn’t gotten too bad. We just   pray that we all recover quickly. I will try and type some more when I get   some news later on today. hope everyone had a great weekend. Remember to hug   and kiss your kids and make sure they know how much they mean to you!!! So   many times we take that abilty for granted. Never miss a chance to let your   kids know how much they are loved and adored, they are more precious than   anything else you have. K going now since I am rambling, think I might   acctually be able to go back to bed and get some more, or rather some sleep.   Enjoy the sunshine this week!

August 9

‎Monday, ‎August ‎09, ‎2010, ‏‎7:00:17 AM | smolby@gmail.com (Sean Molby)

This   post will be a short one as I am exhausted and have to get back to Tristan,   who is crying as I type 🙁 Tristan’s   procedure on Friday went good. No surprises with the exploratory cath. They   did not need to balloon or put a stent in which is good. The tentative date   for his second stage is August 16, so next Monday. That is not set in stone   there is some more testing they need to do first but they did say his surgery   will be next week sometime as long as no other emergencies bump him back.

He   has been real fussy and grumpy since Friday, thank goodness for Sean this   weekend. I have been up with him most of every night since Friday night and   Sean has helped out during the day so I can get some sleep. We are not sure   why he has been so fussy, he really should not be from what the doctors say   but they had to try the cath in both legs as when they went in his right leg   it did not go through so they had to go through the left. Soooo, I think he   is in some discomfort there. I am hoping that with in a couple more days he   will be back to his normal happy self.

Thanks   to everyone who said a prayer and kept Tristan in your thoughts this weekend.   I will let everyone know more when I find out more myself…

August 5th 11PM

‎Thursday, ‎August ‎05, ‎2010, ‏‎11:20:53 PM | smolby@gmail.com (Sean Molby)

***!!!   HAPPY 4 months in 2 days TRISTAN DRAKE!!!***

Well   I am sitting here unable to get to sleep so I figured I would go ahead and do   an update since I probably will not get a chance to do one tomorrow.

Tristan   has his cath procedure tomorrow, Friday, August 6 starting at 9 AM, they do   not expect any complications but he still has to be put under anesthesia and   there is always a risk with that. It is suppose to just be a basic cath but   there is a slight chance they will have to place a stint or balloon the   artery that is showing a blockage. It will all depend on if his cardiologist   feels that he will be okay until his next surgery without that intervention.   The main purpose of this procedure is to get measurements to access when the   best and safest time for the second stage of surgeries for Tristan’s   condition should be. My own personal feeling is it will be within the week of   August 16-August 20, I know it can not be any time next week regardless of   what they find because he must be taken off aspirin for at least a week   before his second stage surgery and he is still taking that med, so we will   have a weeks notice because of that.

Even   though this is a simple procedure in comparison to everything else he has   been through PLEASE remember to keep Tristan in your prayers tomorrow morning   and after noon! I will post an update by Sunday evening unless there are   major complications that prevent me from doing so.

On   a lighter note, Tristan is STILL thriving amazingly well. He weighed in at 13   pounds 11 ounces at today’s visit; he is still just over 24 inches in length!   He got to see a few of his 4th floor nurses today and the ones   that have not seen him in a month or so could not get over how much he has   changed. One even made the comment that you can’t even tell he is a heart   baby he is so healthy looking!

He   is doing really well with his oral feeds as well. He averages between 20 and   60 ML each feed (still just the 2x per day) and LOVES the fact he gets to eat   on his own, he is all smiles when he is done. We have had to increase his   Mylicon by an extra two doses a day because taking food from the bottle is   causing him a lot of gas and with the gas some tummy pain; but he is still a   trooper and keeps trying hard and improving everyday.

His   new favorite thing is to fall back on the bed… as part of his   Occupational/Physical Therapy we practice sitting up, which he is doing much   better at. Anyways, the exercise consists of laying him flat on the bed (or   another flat surface) and getting him to grab my fingers and help pull   himself up. He was doing super great until he found out how fun it is to make   himself fall back on the bed! So now he barely makes it an inch up when he   drops himself back down and laughs hysterically. It is soooo cute but not as   helpful and productive as it was when he managed to pull himself all the way   up! J

Despite   everything I am beyond thankful for all that we have been blessed with.   Tristan is an AMAZING MIRACLE and I can not imagine him being anymore perfect   that he already is, half a heart and all! I have to believe that he has   fought above and beyond all odds and will continue to do so because he wants   to be here with us as much as we want him here. I will continue to believe   that he has not fought this hard to stay alive only to not make it through   this next huge step. However, that doesn’t mean I am not scared shitless   (sorry) and have endless nights and days of constant worry. Every night I   have to go to sleep with the knowledge that it could be his last night with   us despite all he has overcome. Every day/night until his third stage is a   danger and even then a slight danger is always there. I can not begin to   express how much he needs and benefits from everyone’s thoughts and prayers   and I hope that even as things are going well for Tristan you remember to   keep him in mind as these babies are known to have fatal set backs even if   everything appears to be going great. It is through the strength and devotion   of all our family and friends that has made and kept Tristan so strong. Trust   me when I say he knows how much he is loved and cared for. He senses all that   every one of you do for him**** PLEASE KEEP IT UP! ****

Until   Sunday~ Christy

August 1, 2010

‎Sunday, ‎August ‎01, ‎2010, ‏‎11:47:21 PM | smolby@gmail.com (Sean Molby)

Last   week was extremely eventful and busy. On   Monday’s home visit we found he is still gaining as well on the Nutramigen as   he was on the Elecare. He is now 12 lbs and 9 oz. His feeds are now up to 120   ml over 30 minutes-what a little piggy J His blood pressure is still really   good and she has no new worries with him. After that we got to visit with his   new friend Henry (who will be 1 in about 3 weeks), who also had a rough start   in life and his mommy, Christie, a friend of mine from the SPED class I   worked in Lawrence. They came up to see us for a while. It was awesome to get   to see them especially seeing how well Henry is doing and how far he has   come. Henry developed a huge crush on Briahnna; he is really into older   women! J

Tuesday   Tristan got to go to Deanna Rose Farmstead with his two big sisters and all   of his cousins-we also met up with one of my old daycare families. It was   neat to see how much they have grown just in the last few months and also sad   cause it reminds me of how much I miss them. It was REALLY hot so we didn’t   stay long and we all opted to hang out at the pool, the kids had a blast and   Tristan was hilarious chilling out on his floaty in his shades and sunhat! It   was nice to just act normal for a while.

Wednesday,   Tristan had his cardiology appointment and his occupational therapy   evaluation. Both appointments went well. The OT re-evaluated Tristan’s oral   eating skills and assessed that he would benefit from starting small oral   feeds twice a day with a slightly thickened formula, and his cardiologist   readily agreed that it would be good for him. So he now gets to eat two times   a day for 15 minutes each feed with no limit to how much he takes as long as   it is taken within the 15 minute time frame. So far he is averaging about   30-40 ml each feed which is pretty good considering he has not eaten orally   in almost two months. He, of course, loves it! He has been ready to eat by   mouth for a while now.

His   cardiology appointment went good but gave us some alarming news. He had   another EKG and an echocardiogram; the results from the tests are showing a   blockage in one of his arteries that was not there a month ago. However, this   was something they had anticipated happening with the Hybrid procedure so all   it means is that he is now in need of his next surgery. It is a little   earlier than what we had hoped but they are very happy with his growth and   recovery while being at home. He has another catheter procedure scheduled for   next Friday, August 6 at 9 AM, so PLEASE remember to keep him in your prayers   during that time. After they get the measurements from his cath. procedure   they will determine how soon they need to do his 2nd stage of the   surgery. Regardless, it will be done before the end of August.

It   wasn’t completely unexpected news, I had a feeling about this all week but it   is still very heart wrenching and stressful thinking about having to go   through this all over again! I just pray he has grown enough and is strong   enough to make it through as well as he did with his last surgery!

Since   he had such a big week we kind of just hung out at home and rested on   Thursday, Tristan was a bit fussier than usual which we have found out is   from eating orally -go figure- he has a lot more air than he is used to so we   upped his mylicon from two times a day to three or four, so far it has seemed   to help.

Friday   we went to the drive-in theatre with the girls and Caleb. Tristan thought it   was great; he loved seeing the pictures move on the big screen. It was Ella’s   first time as well; she was all over the place! She seemed to think the big   open space was much better than watching the movie J daddy had to deal with   her since I had Tristan, eventually she settled down and crawled in the back   of the van and cuddled with Tristan and me as she fell asleep.

Saturday   was a lazy day for us again. I stayed home with Tristan and Sean took all the   other kids out for a day of fun since it is Caleb’s last weekend here. He is   moving to Florida on Monday. It was nice just spending time holding Tristan   but I missed the kids and was happy when they were home.

Today   was pretty uneventful as well; we went to an early dinner with grandma and   grandpa and hung out with them for a few hours. Then we came home and cleaned   a bit and started to organize the playroom downstairs. I can’t begin to tell   you how much fun that was! J

Next   week will be another busy week. He has his home visit and OT tomorrow. His   cousins are coming over on Tuesday, Briah has school enrollment on Wednesday,   and then we have preadmission at Children’s Mercy on Thursday and then his   procedure on Friday. So until and even after then please remember to keep   Tristan in your prayers as he is in need again of all the strength and help   he can get as we face this next stage!

Again,   Thank you all for everything

late, late, late July 23 🙂

‎Saturday, ‎July ‎24, ‎2010, ‏‎12:03:14 AM | smolby@gmail.com (Sean Molby)

Just   a quick update. Tristan   continues to do well at home. He is getting so big! He is now 12 pounds 1   ounce and that was at his home visit last Monday so he is actually probably   closer to 12 ½ pounds by now.

His   first Occupational Therapy evaluation visit was last Tuesday. The lady that   came was really nice but unfortunately will not be Tristan’s case worker, but   she promised to send someone amazing for Tristan. She was however very   impressed with how well Tristan is doing. She was astonished by his good   coloring and how well he interacts with people.

He   pulled his NG tube out again earlier this week-the little turkey, that is his   6th time- he was all smiles and giggles with that one. He is   soooooo proud of himself when he does that, poor thing hates that feeding   tube in his nose. Hopefully only a little while longer and then maybe he will   be able to eat on his own orally!!

hint,   hint: That is what needs to be in everyone’s prayers now!!!

His   next cardiology visit is this Wednesday, July 28. We will probably find out   an estimated time on his next heart surgery and then will discuss further if   the G-tube will really be needed.

On   a last note, just to give everyone a heads up, since my schedule is beyond   busy I have attempted to set up a better, or rather a more organized system   of scheduling my time and I figure if all goes well I should be able to get   an update up every Friday evening.

So   that is my new goal to have some sort of update once a week and it will be on   Friday! Unless something major happens that will probably be the only time I   will be able to get anything up. Thank you all again for all the prayers and   thoughts.

Also,   we are having a HUGE fundraising garage sale for Tristan tomorrow-

July   24 from 8-3. Feel free to stop by. Tristan will be there as well as Sean and   myself.

The   address is (you can google for directions)

517   NE Emerald Drive Lees Summit, MO 64064. (There will be another one at a later   date in Lawrence)

July 12th

‎Monday, ‎July ‎12, ‎2010, ‏‎9:26:30 PM | smolby@gmail.com (Sean Molby)

***!!!   HAPPY 3 months and 5 days TRISTAN DRAKE!!!***

First   off, again, I AM SOOOOOO SORRY that there has not been a post in such a long   time but to be fair to me I have been beyond extremely busy… so be forwarned   this is a LOOONG posting!!! J

To   start with, Tristan is doing AMAZING!!! The doctors are very happy and even   more shocked at how well Tristan is doing at home. He is now, as of this   morning’s home visit 11 lbs 6 oz and 24 ¼ inches. He is gaining an average of   1.5 ounces per day! Their goal is only ½ to 1 ounce per day. When he was born   he was 7 lbs and 18 ¼ inches long so in the 2 ½ months in the hospital he   only gained a little over 1 pound and 2 inches. His last day in the hospital   he was 8 lbs 8 oz and 21 ¼ inches, so in a little over 1 month he has gained   nearly 3 pounds and 3 inches, so you can see how much better he is doing at   home!

His   oxygen saturation levels are still pretty good. They remain in the low   80’s/upper 70’s. They will lower naturally as he grows which is what is   expected, the 1st surgery is only expected to last a few months.   They anticipate that his next heart surgery will be somewhere between late   August and October-but definitely before RSV season starts. For those of you   that don’t know his 2nd surgery is his most dangerous, normally it   is the 1st but he did not have the traditional Norwood-he was not   stable enough to survive it- he had the Hybrid which is less invasive for a 1st   surgery which makes his 2nd surgery even more of a risk than the   traditional Norwood because they have to undo the Hybrid, then do part of the   Norwood and all of the Glen. (these are the names of the surgeries if anyone   is interested in googling them for info), I refer to his 2nd stage   as a Nor-Glen which the doctors have found humorous and accurate so that is   the unofficial new name for it at the hospital. J His color still remains   really good. He is still his normal, abnormal pinkish color, as usual, he   defies all odds. (Statistically a heart baby is a pale bluish/gray color,   Tristan, however, usually has the coloring of a normal healthy baby).

Tristan   had his first GI follow up visit last week and she was speechless at how much   he has changed. She said she was prepared to argue that there was no way he   would be ready for another swallow study and oral feeds but she was astounded   at his developmental advancement and said she honestly didn’t know how he   would do. She is leaving it up to occupational therapy, which his first   appointment with them is July 20th, but she did say that if he was   her baby, just because of the risk involved, she would wait until after his 2nd   surgery to do anything orally (only because any lung infection or damage   would greatly reduce his chance of a healthy recovery-oral feeds if he   aspirates could cause him to develop pneumonia). She has switched feeding   formulas for him from Elecare, which is $50/can and costs us an average of   $400/month to feed him to a less basic formula, Nutramigen. It is only   $25/can so that cuts his monthly feeding cost in half. He will most likely be   on that for a month and then we might be able to start introducing breast   milk again, so I am still pumping and remain on the restricted diet.

For   those that didn’t know there is still the possibility Tristan has a breast   milk allergy and since he was diagnosed with NEC (necrotizing entercolits) he   was started on an extremely basic formula- it is already broken down so all   he needs to do is absorb it-no digesting necessary. The Nutramigen is still   fairly basic but not fully broken down so he will have to start digesting   some, this will lower his weight gain slightly since he will burn calories to   digest his food but he should be fine. Because of his possible allergy I was   put on a restricted diet so that when we reintroduce breast milk he hopefully   will do okay. The diet consists of removing dairy, soy, peanuts, tree nuts,   eggs, and wheat products from my diet which basically means all I can eat is   animal meat that is usually just cooked-no flavoring aside from herbs, and   then raw fruits and vegetables, since most cooked ones only taste good with   butter. I get to gradually add each restricted food group in and then based   on how Tristan reacts to it we should be able to see what triggers his   allergic reaction. I have now added wheat in so I am only restricted from   eggs, peanuts, tree nuts, soy and dairy products. It is still really hard and   frustrating but on the plus side I have lost TONS of weight which is nice.   But I REALLY, REALLY miss chocolate! J

He   is now taking 95 ml of formula every 3 hours which is up from his original   75mL/3 hours and he is up from 20 calorie formula to 24 calories, which is   partially why he is growing so well….he is a little piggy. He will probably   be up to 100 ml by the end of next week because he is getting fussier right   before his next feed again!

There   is still debate over him getting the G-tube. Sean and I are both a lot more   comfortable with him having the surgery now that he has had a chance to   recuperate and grow some but we do not want it if it will even remotely   affect his ability to recover easily from his upcoming heart surgery. The GI   doctor said she would like to wait until after his 2nd heart   surgery since he is doing so well with the NG feeding tube and with the   possibility that he will do fine with oral feedings by then. The heart   surgeons are still pushing for the G-tube surgery so we really don’t know   what is going to happen there. The GI doc said she was going to call his   cardiologist and discuss in detail and length the pro’s and con’s of it and   then they would present it at the next heart conference- which is held every   Friday and then we will get to talk to his cardiologist about it at his next   cardiology appointment scheduled on July 28th. So there will be no   news about that until then.

Developmentally   Tristan is above and beyond what they expected. He is developmentally age   appropriate and according to “statistics” he should not be- you see now why I   don’t believe too much in statistics! He is smiling and laughing, and loves   to make cooing sounds and bubbles with his mouth. He holds his head up and   can actually pull himself forward in his car seat and swing, when not   strapped in. In fact he finds that quite humorous until he realizes he is   stuck with his head by his feet because he can’t pull himself back up just   yet. He has not yet rolled from front to back or back to front but they are   not too worried since the normal age range for rolling over is 3-4 months. It   would help if he didn’t scream like a banshee like he usually does when   placed on his belly which I cant allow him to do because it is too hard on   his heart; but he still has time and if he doesn’t make that milestone when   normally expected it is really no biggie especially since being in the   hospital he should be more developmentally aged at 1 month instead of his age   of 3 months. He starts his home occupational and physical therapy next week   so that will help as well.

He   has become rather spoiled and does not like to lay or sit with nothing there   to entertain him, so I have been searching for different mobiles and such to   help stimulate him when he has to lay down for his feeds and such, it has   been hard to get much done cause if he gets to crying too hard I have to hold   him to calm him down so that his heart rate won’t get to high, he has learned   rather quickly the results of crying so he gets held a lot more than   necessary but I don’t mind. Not getting to hold him for the first month kind   of makes it not so hard to hold him all day now.

For   now things seem to be going very well. He has weekly home nursing visits, a   weekly call from a special case nurse through our insurance company, and for   now, weekly occupational/physical therapy home appointments. His cardiology   appointments are every 3 weeks, his pediatric appointments are about every 2   months, his GI appointments will be every 3 months, and his neurology   assessments will be every 6 months. Our days are exceptionally busy but well   worth it to have him home. Since I am telling you everything else I will give   you a description of a typical day in our home:

6:30   AM overnight feed goes off/flush his NG tube (Sean usually does this)

7:00 AM   Tristan wakes up-diaper change- I sometimes get to take a shower and get   ready for the day at this time-but not always J

7:45 AM   start 8:00 feed (make 24 ounces of formula, warm up 95+ ml’s, check feeding   tube placement, reprogram feeding monitor for the day, start feed)

8:30 AM   feed goes off/flush line

9:00 AM   give morning meds(1/4 tablet aspirin, .3 ml lasix, .4 ml digoxin, 1 ml   zantac, .3 ml mylicon)

9:15 AM   Ella usually wakes up-so change her diaper and feed her breakfast

9:30 AM   Tristan: change diaper/change clothes for the day, Ella: change clothes,   brush teeth, do her hair

10:30 AM   art time for Ella

10:45 AM   start 11:00 feed (warm up 95+ ml, check placement, start feed)

11:30 AM   feed goes off/flush line-diaper change

12:00   lunch time

12:45 PM   try to get Ella to lay down for nap (has not worked so well lately-it usually   takes me 1-2 hours to get her to sleep)

1:45 PM   start 2:00 feed (warm up 95+ ml’s, check placement, start feed)

2:30 PM   feed goes off/give .3 ml mylicon/ flush line-diaper change

3:00 PM   theoretically Ella wakes up from nap- but not so much so lately

3-5   snack time somewhere in there J / outside play for Ella

4:45 PM   start 5:00 feed (warm up 95+ ml’s, check placement, start feed)

5:30 PM   feed goes off/flush line-diaper change- start making dinner

6:00 PM   dinner / do the dishes

7:45 PM   start 8:00 feed (warm up 95+ ml’s, check placement, start feed)

8:30 PM   feed goes off/flush line

8:45 PM   bath time for Ella and Tristan

9:00 PM   give evening meds (4 ml Phenobarbital, .3 ml lasix, .4 ml digoxin, 1 ml zantac,   .3 ml mylicon)

9:15 PM   get Tristan ready for bed / start getting Ella ready for bed

10:15   start Tristan’s overnight feed (warm up 270+ ml’s, check feeding tube   placement, reprogram feeding monitor for the night, start feed), place O2   probe and turn on oxysimilator (saturation monitor), turn on Angel monitor   (it is a SIDS monitor that alarms if there is no respiratory movement at   least every 10 sec, change his diaper again and swaddle him up for the night.   (It is really important that Tristan cannot move his hands and night, if he   were to pull out his feeding tube during a feed at night it could kill him)

I   usually get to sleep myself somewhere between 11 and midnight. At some point   during

the day   I try to spend some time with Briahnna and then I also have to find time to   get the

basic   house cleaning and laundry done-not as easy as it sounds. Occasionally we get   out

and go   over to grandma and grandpas so the girls can ride the horses and just get   out of

the   house. My goal is to start going on walks everyday even if only for a few   blocks so

that   Ella and Briahnna don’t feel so cooped up. Briah has spent quite a bit of   time with

my   parents and also my sister so that she isn’t so bored and she has had a few   friends

over to   spend the night too. On top of all this we are trying oto potty train Ella   and get her

to sleep   in her new room-neither one is going too well. But basically this schedule is   the

reason I   really have not had time to post. I started typing this one at around noon   and as

you can   see it is finally getting posted around 7:30.. J Overall, as I have said   before,

despite   the busyness everything is wonderful. It is amazing to have my family   together at

home and   to see Tristan doing so good. So keep praying that everything keeps going so

well.

P.S.   Tristan IS allowed to have interaction with people so if anyone would like to   come

visit   just let me know. I wouldn’t recommend just stopping by as we do have a lot   of

appointments   ands so we are not always home. Thanks again everyone for all of your

love,   prayers and support!

June 12

‎Saturday, ‎June ‎12, ‎2010, ‏‎5:28:34 PM | smolby@gmail.com (Sean Molby)

So   much has happened this past week. Tristan is still doing good, gaining weight   everyday. He is up to 8 pounds 8 ounces! He is smiling and laughing now when   he sees me and we even got some good pictures of it but Sean has not had the   chance to update the photos lately.As   I mentioned in the last post Sean and I had discussed not going through with   the G-tube surgery for feeding, however the doctors had different ideas. We   were expected to get to go home last Wednesday with no surgery but then a new   complication arose….statistics! We spent most of last week arguing and   debating over what is the next best step for Tristan. The doctors are worried   because apparently statistics show there is a high mortality rate (risk of   dying) for a heart baby, especially one that has had the hybrid like Tristan   has, if an NG feeding tube is left in after surgery. They don’t know why but   the risk of (basically sudden) death is 20%. That is about the same risk as   his 1st heart surgery. I can not begin to explain how scary that   is.

The   problem is another surgery even as basic as G-tube could be dangerous for   Tristan as well, but no one knows “for sure” the best solution for him. The   doctors want the surgery because it is an easy fix. We and most the nursing   staff are not sure how Tristan will do. His “statistics” show a hard time of   recovering from very simple procedures but he is stronger now and doing much   better than he has in a long time. It is too early to do another swallow   study because of the risk of excessive radiation. Personally I had a horrible   feeling about the GI surgery until Sean and I decided to not go through with   it.

Ultimately   the decision was taken out of everyone’s hands as the surgical team made the   decision early this morning and refused to do any surgery on Tristan, that   wasn’t life or death, this close after recovering from the NEC. They did not   consider the GI surgery a necessity and said if the doctors still wanted it   in 6-8 weeks they would re-evaluate him then.

Soooooo,   we are not back to square one. No surgery, the NG feeding tube stays and   Tristan is to be discharged to come home for his very first time in a couple   of days. We have to wait for some home health care equipment to be ordered   and delivered before he can come home.

I   am not going to lie; I am scared to death for my baby boy. What if I am   wrong, what if the surgery would have been better. I don’t know what I am   going to do if anything happens to him. All I have left is to ask all of you   out there to please pray for Tristan and our family as we bring him home.   Please pray that he has no complications and that he keeps growing and   looking healthy. Pray and please ask that he be allowed to stay here with us   to live the life he has tried so hard to fight for. Just please pray!   ~Christy

June 7 12:30am

‎Monday, ‎June ‎07, ‎2010, ‏‎1:19:55 AM | smolby@gmail.com (Sean Molby)

Tristan   has been taking his feeds all weekend with no problems! They didn’t start   Friday as originally planned but started Saturday instead, no medical reason   for it; the intern didn’t learn how to count while in medical school and he   added too many days on, it won’t hurt Tristan just delayed his feeding a   day-very comforting to know that someone unable to count days on a calendar   has medical say in my sons care but oh well J ! They   started him out on 5 mL continuous drip for 3 hours, that is only a teaspoon,   they did that for 8 feeds-so 24 hours- then they bumped him up to 12 mL for 3   hours for a few feeds, then 14 for 4 hours, and then they will do a slow   bolus(all at once) feed of 45 mL over 2 ½ hours at 1:00 am (June 7) then wait   another 1 ½ hours and do another 45 mL bolus over 2 hours (this will be a 5   am). After that they are not sure how they will proceed, they want to see how   he will do with what he has been given so far to make a decision. They are   going much faster than we had thought and that is kind of nerve racking but   so far Tristan has handled everything well. He has only had one stool so far   but there were no traces of blood in it so that is good.

No   other big news. For the next week or so it will just be a waiting period and   we will have to see how Tristan does as he is the boss. Sean and I have   talked and we did make a tentative decision to for go the GI surgery and just   keep Tristan on a NG feeding tube (through his nose) we have not discussed   this further with the doctors yet but it is ultimately our decision and we   just feel right now another surgery is just too much for Tristan and may   compromise his ability to recover from his next open heart by-pass surgery   here in a few months. As that will be his most dangerous surgery of all we   feel it is important for him to be as rested and for his body to be stress   free for as long as possible. This decision may changes as does so many   things but for now that is what we have decided on. Hope everyone has a great   weekend! ~Christy

June 3 11:08PM

‎Friday, ‎June ‎04, ‎2010, ‏‎11:49:54 PM | smolby@gmail.com (Sean Molby)

Happy 8 week Birthday Tristan!!

Today   was a trying and stressful day! It turns out I was correct and Tristan’s   hemoglobin had dropped from 13.7 to 12.0 (this is a lot) in less than two   days, so we needed another transfusion and that meant another IV. It took two   different teams, three hours and four tries but we finally got one in, poor   Tristan has been stuck so many times he probably feels like a pin cushion.

He   looks much better and is back to his normal, abnormal pink color (ha ha)–   for those of you that don’t know a normal unsick baby is usually a pink   color, so that is normal; but for a sick and especially a heart defect baby   their color is usually pale or grayish, however Tristan is not normal even in   his abnormality and he is, against all medical odds, “normally” very pink!   (hope that wasn’t too confusing) J

Not   much else happened today. Tristan is now resting peacefully and most likely   will stay asleep through the night!

Also,   he is finally getting bigger!!! He is now 22 ½ inches and weighs 8 lbs 2 oz.   Up from his birth and 1 month weight of 7 lbs .04 oz and 18 ½ inches!!!!

June 3

‎Thursday, ‎June ‎03, ‎2010, ‏‎2:17:29 PM | smolby@gmail.com (Sean Molby)

Yesterday   they had a hard time placing or rather replacing Tristan’s PICC line. They   dried to put in a double lumen but his vein was not large enough to handle   that much so they had to switch to a single. A single line will work for him   but it means that if he has to have another transfusion they will have to run   another IV to give it because transfusions take 4 hours and he can not be off   his lipids and TPNs that long-they took him off for an hour yesterday and his   glucose dropped down to 40 (that is really low). When   placing the line he lost more blood than they figured he would so when we   went in to see him he looked scary pale. Of course he had another new nurse   yesterday so she didn’t think anything of it, since most heart babies are   paler-Tristan however is not and we he is it usually means his hemoglobin had   dropped dangerously low. They were suppose to run labs on that this morning   but somehow the order for it didn’t get placed and so now we have to wait for   a new order. This is all so stressful because it is so hard to get and IV in   him and so we need to know what his levels are so that if he needs another   transfusion a line can be placed during the day because there is no one here   at night that can usually get a line in. We have been through this scenario   twice now so it is very frustrating that we have to explain and possibly go   through it again.

Other   than that he is still doing good, he ends his antibiotics tonight and then   feeds start again tomorrow so wish him luck in digesting everything the way   he is suppose to. Thank you all for your prayers, please keep Tristan in them   as he starts this new process ~Christy

June 1, 2010

‎Tuesday, ‎June ‎01, ‎2010, ‏‎11:33:07 PM | smolby@gmail.com (Sean Molby)

Good   news today, well kind of. They pulled Tristan off of isolation early!! We   have a new rotation of resident doctors and they felt that with all of his   labs coming back clear he no longer needs to be in isolation. There is still   a chance that one of his labs could come back positive for a viral infection   (this is the one that has kept him in isolation) but after 5 days it is still   negative and the doctors think it will remain so even after the final check   on Saturday so they figured there was little risk to Tristan or other   patients. This doesn’t really change too much but it is one less stressor. He   also pooped last night for the first time since last Monday, this is a good   sign and shows that there is most likely no damage to his intestines from the   NEC, we won’t know for sure though until he starts his feeds. They   are going to take him down tomorrow morning to hopefully place a new PICC   line, this is just a precaution since his first blood lab was positive, if   they can not find a place to put it they will just keep his original line and   continue checking labs.

He   finishes his antibiotics on Thursday night and they WILL start his feeds on   Friday-YEAH!!!!- but very slowly. Only 5 ml an hour, if he handles this well   they will increase gradually and when he gets up to his needed amount, about   22 ml per hour and shows that he can digest it properly they will then go   ahead with his GI surgery to insert his GI feeding tube. They decided against   doing another swallow study until the 3 months are up.

Other   than that no changes, he is still being so good throughout all of this and   smiles quite often. We are hoping for a release date in about 3 weeks, and he   will finally come home for the first time! J ~Christy

May 31st

‎Monday, ‎May ‎31, ‎2010, ‏‎11:51:42 PM | smolby@gmail.com (Sean Molby)

Well   Tristan’s hemoglobin dropped this morning to 11.0 so they had to give him   another blood transfusion. That makes 6 so far. Other than that not much has   changed. He is awake most of the day and in a happy mood and then he   generally sleeps through most of the night, thankfully his schedule is not   the other way around. Only   3 more days and he will be off of his antibiotics and gut rest, so he should   start getting some food on Friday! Yippee!!!

Hope   everyone enjoyed their extra time with their loved ones this holiday weekend.   We spent some extra time with the girls ourselves, without them having to be   at the hospital. It was hard being away from Tristan but I think Briah and   Ella enjoyed just hanging out at home with us for a change. Sweet dreams to   all out there who read this tonight, otherwise I hope anyone who reads this   in the morning has a wonderful Tuesday day! J ~Christy

Sunday May 30th

‎Sunday, ‎May ‎30, ‎2010, ‏‎9:17:35 PM | smolby@gmail.com (Sean Molby)

Not   much exciting news today, pretty much the same as yesterday. Tristan is   progressing well with his anitbotic treatments, and we are just   waiting……..and waiting…….to start feeding hime again. Please read the   previous posts for more information. Thank You

May 28th

‎Saturday, ‎May ‎29, ‎2010, ‏‎11:50:43 PM | smolby@gmail.com (Sean Molby)

I   know it has been a while and I am sorry but it has been really crazy here at   the hospital and we have been up here most of the time and by the time we do   get back to the house we are too exhausted to post anything. There   have been quite a few changes since we last posted. Tristan was set to be   released last Monday and then again this upcoming Monday but we have   descovered he is not doing as well as he was. He was having what we thought   was some minor complications that turned out to be very major. When they took   the feeding tube out we thought he had been doing good but when we tried to   switch him to unthickened breast milk he was not doing well and aspirating a   lot so they did a swallow study to figure out why, it turns out that he is   silently aspirating with every few swallows even with the thickener and so it   was determined that it is not safe to feed him by mouth, meaning they need to   put in a GI feeding tube, so another surgery. It was scheduled for today,   however other newer complications have set it back.

He   was having blood in his stools and they were monitoring those, thinking it   might be some sort of allergy. They were getting progressively worse and   despite my constant asking they were just planning to continue to monitor it.   Thankfully a new attending doctor came on the floor and was reviewing   Tristan’s case and he inquired why they had not contacted GI (the gut   doctors) for his stools. Long story short GI was consulted they did a few   tests and found that Tristan had developed NEC (necrotizing endocolitis). NEC   is a bacterial infection found in the GI tract that after a period of time eats   through the gut and deadens it making it useless, this if left untreated or   not caught is fatal… if it is not caught early enough they have to do surgery   to remove part of the small intestines-something that Tristan is not stable   enough for. The treatment for this is a combination of antibiotics and gut   rest, meaning nothing can be introduced into his stomach for 10-14 days, so   basically they starve him. He is on TPNs and lipids for nutrition but he   still feels the hunger. They do believe they caught it in time but it will   take through the end of the course of antibiotics to know for sure. In   addition to this the bacteria manage to seep through his intestinal walls and   infect his blood, which for him is dangerous since that blood is then pumped   to his heart, they again believe that they started the antibiotics on time   and that no damage has been done but they will have to wait till next week   when they do another echocardiogram to know for sure.

As   of know Tristan is in isolation, he can still have visitors but we have to be   cautious that no new germs are introduced into Tristan’s body. He has been a   trooper through all of this despite feeling hunger pains and all the sticks   they do on him to take blood samples, he is still rarely fussy. The nurses up   here love him to death and despite GI saying they thought he might benefit   from going to the PICU for better monitoring, the 4th floor staff   all agreed they wanted to keep him up stairs were he is at and have made some   exceptions to keep him there. The nurses have been wonderful through all of   this and very supportive. It has been scary but hopefully they did catch it   in time and this is only a temporary set back.

They   will restart Tristan’s feeds by NG tube on June 4th or 5th   but they will go very slowly and with a very basic elemental formula. Then   after he has showed signs of being able to digest that properly and no new   bacteria is found they will then discuss doing the GI surgery for a G-tube   for feeding. This will be 3-4 weeks away.

Please   keep Tristan in your prayers as he is in need of them again. Thank you all   for your support~Christy

The   number to his room is 816 460 1044 extension 4713. Just call before you come   up and please make sure you or anyone with you has NO symptoms of illness at   all. It is very important Tristan not be subjected to any viruses or   bacterial infections that could set him back.

May 29th 11:00 PM

‎Saturday, ‎May ‎29, ‎2010, ‏‎11:50:20 PM | smolby@gmail.com (Sean Molby)

Since   we have had complaints on our lack of keeping up with updates I will make a   quick post! J (no, seriously it means a lot to know that everyone is always   thinking of Tristan and wanting to know how he is doing. Again I apologize   for us not keeping everything updated the way we should).Anyways,   there really are not any new changes. He will be in isolation until June 6th   but he should start getting food again on either June 3rd or 4th.   He has been such a good boy throughout all of this. All of his blood cultures   but the first has come back negative so that is awesome news; because of this   they are not going to do any more cultures daily. This will help a lot in   getting his hemoglobin levels back up. As of today they are 12.2 down from   12.9 Thursday but they are taking the maximum of blood out of him daily so   that is actually not such a bad number but his ideal numbers should be above   14. They are hoping he is finally starting to rebuild his own levels   naturally, so for now they are holding off on another transfusion-he has had   5 to date. They will still have to draw blood for his labs but they don’t   need to pull as much for those as they did the cultures.

He   gets daily x-rays now instead of the 2x a day he was getting and they also   have all come back looking good. Each x-ray seems to look better than the one   before it. So for now he is doing good, only a little fussy every know and   then but hey if I had a huge tube coming out of my nose (this is a suction   and it decompresses his stomach and keeps anything from going through to his   gut), a PICC line taking up an entire vein (a double IV for his meds, some   blood draws, lipids, and TPN’s), wires coming out of my chest(checking his   vitals-heart rate and respiratory rate), and another monitor on my foot   (testing is oxygen saturation levels) I would be a colossal B!%@# !!!! J   (edited for the younger ones) but he still stays in good moods and smiles   quite often, such a sport!

That   pretty much covers it. Hope everyone has a fun holiday weekend. Please enjoy   your time with your kids and family it is more precious than you could ever   imagine!!! ~Christy

May 18th

‎Tuesday, ‎May ‎18, ‎2010, ‏‎11:32:43 PM | smolby@gmail.com (Sean Molby)

Sorry   we have not posted in a while. Sean has been super busy with the move and I   have barely had time to breathe with taking care of Ella and Tristan- I am   now in charge of his day to day care with assistance from the nurses only   when needed- and then also dealing with all the appointments, meetings, and   trainings daily.Tristan   is doing a little better. He has had a few set backs but seems to bounce back   fairly well. Today’s setback was he woke up with a fever around 8 am and so   they had to run a series of tests to check for infection. So far everything   has come back okay but it takes up to two days for the blood culture to show   anything so we won’t know for sure until later tomorrow. After they gave him   Tylenol once, his fever has not come back so hopefully it was just an   environmental cause; like he was just too warmly bundled up. He also has had   blood in his stools the last couple of days and we have not figured the cause   of that. There are several reasons he could have that so right now they are   just monitoring him.

They   took his feeding tube out yesterday morning, not that he was ready for it.   They just wanted to see how he would do and if maybe he would start eating   more on his own without it. So far it has worked. He went from taking 15-20   ml on Friday each feed and then the rest by tube to taking 40-50 ml with each   feeding on his own. He has to drink at least 40 ml each feed to stay hydrated   and they are going to give him another day to up is intake to at least 50 ml   each feed before they place the NG tube (feeding tube) back in because we   need to make sure he is gaining weight. He has to have significant weight   gain to be ready for his next surgery here in a few months.

It   has been stressful but we are making it through. Tristan can definitely still   use your prayers to help him over this next hurdle so that we can bring him   home.

For   those that are interested he can have visitors now so please feel free to   come up and say hi. The number to his room is 816 460 1044 extension 4713.   Just call before you come up and please make sure you or anyone with you has   NO symptoms of illness at all. It is very important Tristan not be subjected   to any viruses or bacterial infections that could set him back. Thanks to you   all! Christy

May 12th 1PM

‎Wednesday, ‎May ‎12, ‎2010, ‏‎1:19:10 PM | smolby@gmail.com (Sean Molby)

Well   last night was not the best night we have had. I managed to scare off several   nurses and the resident doctor…she was a first year so it wasn’t too hard to   intimidate her I guess. So you know what I am talking about, I will explain. Tristan   had a scary set back yesterday; he had a difficult time recovering from the   cath procedure that was done. His O2 levels were continuously low averaging   between 50’s and low 60’s. It is dangerous for him to be lower than 70 and he   has averaged around 85 since his first procedure so these low saturation   levels were rather alarming.

As   Sean mentioned before they tried to take two samples of blood, after he   returned to his room from recovery, to test his hemoglobin levels and both   clotted. This was after they blew 6 veins trying to get his IV in for the   catheterization, so for me that was enough. I was done with them poking my   baby boy and messing up. So I said no more they could wait awhile or just   have the ICU put an IV in since it was fairly apparent that he was going to   need a transfusion. As this isn’t “protocol” the resident doctor tried   arguing with me about it, I gave in saying they had one try to get an IV in   then they needed to call a NICU nurse, she wasn’t happy but agreed. While   waiting for the charge nurses to come and make an attempt, Tristan for some   reason did not do well with his feed and threw it up, in the process gagging   and aspirating nearly choking himself to death…and I mean that literally. He   stopped breathing and they had to call in several nurses and then suction   everything out of his nose and mouth, as they can not do the Heimlich, it was   very scary and stressful. This happened once more by the time they came to   try an IV line so needless to say I was a stressed out wreck and not a very   happy camper, not to mention exhausted as it was around 1 AM and I only got   about 3 hours of sleep Monday night as I was restless thinking about the cath   procedure. So when they tried, they failed, they blew another vein…they were   told to leave (by me) J! Then the NICU nurses came up and tried to place an   IV line in his head to no avail, another blown vein. If you haven’t guessed   by now I am fairly… well, pissed off is the most polite term I can use.

So   that makes 8 blown veins, on top of his cath procedure that was done, where   they had trouble in the end with stopping the bleeding, consistently low O2   saturation levels making him have to go on oxygen support, plus the vomiting,   all on top of him missing four feeds this morning so he was somewhat weak   plus lethargic from the sedation, and then they were doing assessments every   hour. Poor Tristan was just exhausted and so I put my foot down and said to   go to the end of the chain of so called “protocol” and call in anesthesia to   do the IV, I was finished with people blowing his veins and screwing up the   blood draws, I was not quite as nice saying that as I am now. By this time I   had scared the resident off and so she wouldn’t come to the room to talk to   me but she did call, and we argued about the “hospital protocol” while she   was trying to say that the next step was the transport team and that she had   already called them to try to run an IV. I was rather perturb, said no and   insisted on anesthesia doing it. Well in the meantime transport was available   and had come to the room and while talking with them, our night nurse, and   while on the phone with the resident, transport assured me they were only   going to look and if they didn’t think they could get a line in they would   call anesthesia themselves as the lead transport team member had a child of   her own and knew exactly what I felt (finally someone with and actual child   of her own who understood)! I agreed as I actually felt comfortable with this   person. It took almost an hour of searching but she found one vein she thought she might   be able to use as all of his other veins were useless because of the blood   draws and blown veins. She asked my permission and so I told her she had one   try but then I was done. We all said a prayer laid Tristan’s blessing blanket   over him and hoped for the best. Thank God she got it with no problem what so   ever and Tristan didn’t even cry and sat still through the whole thing.

Things   started to go very smoothly after that, he finally got his transfusion and   has managed to keep all of his feeds in so far. I refused the PO (oral)   feedings yesterday as I didn’t want to exhaust him and I refused them today   as well, he has been through so much I just want him to have a day of rest   without having to do any work at all, he definitely deserves that!

Since   the transfusion his O2 stats have been in the upper 70’s lower 80’s so   perfect for him and he is nice and pink again and has been happy and   comfortable most of the morning.

I,   however, am exhausted as I didn’t get to sleep this morn until after 3 AM and   it was in an uncomfortable chair as Sean slept on the bed/couch with Ella in   Tristan’s room since we were not comfortable leaving him. Let me say 7 hours   of sleep in two days is NOT enough!! J

Thanks   again everyone for keeping Tristan in your thoughts and prayers. I ask or   rather beg that you continue to do so as this has set him back and it will   probably be another week or so before he is released to come home instead of   this weekend like we had hoped. Then we get to have him home for only a   couple more months until we come back up for his second surgery which, for   him, is his most dangerous.

~Christy

Tuesday May 11th 7pm

‎Tuesday, ‎May ‎11, ‎2010, ‏‎9:34:17 PM | smolby@gmail.com (Sean Molby)

Tristan   has had a long day, he had a procedure done called a Heart Catheterization,   this process is completed thru the veins, and is used to equalize the   pressures between both sides of his heart, thus improving blood flow and o2   saturation levels. They were having trouble finding a good location for his   I.V. this morning, and the little guy was stuck six times. The procedure went   relatively well, the doctor showed us pictures, actually video clips of his   heart working and before and after the Catheterization. This was really cool,   technology is really something. He was also able to confirm the correct flow   of blood to his lungs, and the stent that was installed with the hybrid   procedure. So all is good there, when we were finally able to see him post   surgery, his color was pale and he did not look good. Before surgery he was a   nice pink color, the way a baby should look (this is uncommon for a hybrid   baby), and after surgery a pale white/blue color. For mom and I this was   cause for alarm. Through out the course of the day Tristan’s oxygen have been   consistently low, his color has slightly improved from this morning, and they   are concerned that his hemoglobin levels could be low. Apparently during   recovery, he lost some blood and there is a concern that this could be   affecting his Hg levels. So back to the needle, the first vile that was   pulled sat on the counter too long and clotted, Tristan does not like   needles, this stresses him out and in turn stresses myself and mommy out. The   second vile that was pulled was hand carried down to the lab, handed over and   guess what; IT CLOTTED. So right now we are discussing whether to let them   pull it again or go for an I.V. access, that way Tristan won’t have to keep   getting stuck. If his Hg levels are low he will have to get an I.V. anyway   for a blood transfusion. Thank you all for praying for Tristan, we have   people all over the world praying and I have to believe that its working,   Their have been several nurses that have commented ” we have got the   wrong baby, he had a HYBRID?” Basing their statement on his color. So   please continue praying for little Tristan Drake Molby, hopefully we will be   able to come home soon, to be continued……

Tuesday May 11th

‎Tuesday, ‎May ‎11, ‎2010, ‏‎7:18:20 AM | smolby@gmail.com (Sean Molby)

Tristan   has another surgery this morning, please send out a quick prayer for him. I   will update everyone after the precedure. thanks

Mothers Day, Sunday May 9th

‎Sunday, ‎May ‎09, ‎2010, ‏‎7:49:42 PM | smolby@gmail.com (Sean Molby)

Tristan   has been moved up the “floor”, and is doing relatively well, they have been   working on his feeds since May 3rd, gradually increasing the   amount

and   the rate, trying to supplement with a bottle when possible, apparently

teaching   a new born how to suck again is a long process, they tend to forget after

several   weeks of not eating. He has been taken off of his monitors when we are in

the   room, and this is really nice as we are able to hold him with out a bunch of

wires   interfering.

Today   is Sunday May 9th, Mothers Day so please enjoy the day with your

moms   and little ones if possible.

Also   on a side note, for those of you that don’t know we will be moving

throughout   this whole process on Saturday May 15th form Lawrence to Lees

Summit,   and we could use a lot of help, if you would be willing to donate some of

your   time, please let me know (smolby@gmail.com) Thank You and please keep

Tristan   in your prayers.

Sean   & Christy Molby

May 3rd (one week post op)

‎Monday, ‎May ‎03, ‎2010, ‏‎9:47:51 PM | smolby@gmail.com (Sean Molby)

Well   I never thought the sound of a baby cry could be so sweet! Tristan cried for   the first time in three weeks on Saturday 🙂 My apologies for the delay in   updating these posts, we have had an eventful weekend to say the least, and   have just been emotionally and physically drained. So to catch everybody up:   on Friday they attempted to wean him off of the ventilator, however as much   as Tristan does not like that tube down his throat, he was having problems   with this. He was having problems maintaining his O2 saturation levels. They   tried this multiple times throughout the day and finally succeeded early   Saturday morning. So on Saturday he was breathing on his own, and weaning   down his dopamine medication eventually coming off of this and starting   captopril, this is a heart med that he will be able to continue at home. During   all of this we had a big scare, Tristan’s heart rate dropped very low several   times during a period of about 15 minutes, these heart arrhythmia’s are very   alarming, and can be fatal. With no explanation as to why these were   happening, Tristan was hooked up to an EKG machine for monitoring the rest of   the day… and this has not happened since. The good news is that he was able   to maintain his profusion throughout this time, and because of this the   doctors were concerned but not alarmed. He is still doing fine in this   department.

Also   on Saturday, the nurses tried six times to properly insert a feeding tube   into his small intestines, each time they had to take an x-ray to confirm the   placement. Poor little guy had six x-rays in one day, and by late evening   they achieved success!!!! Or so they thought, today an upper G.I. test was   preformed to determine if there would be any problems introducing milk into   his stomach, and found the tube only ¼ of the way inserted into his small   intestines. This is somewhat good news because he did not have any problems   with this or filling his diaper. So that may have sped things up a bit.   Sunday was a good day for Tristan, upon arrival at the PICU, Christy’s   favorite nurse Brecklyn (from the NICU upstairs) was watching over him, and   this made all very happy. It’s amazing how the little things in life bring   you peace, anyway Tristan had a good day, mostly uneventful, weaning down his   medications, and sleeping a lot.

Monday   was more of the same, they removed his drainage tube, all of the staples   where his incision was made where removed as he is healing beautifully (this   is normally a 10 day process), and his arterial line and his picc line were   also removed. Tristan’s feeds have been continuously increasing and are up to   12ml/hr, and soon he should be off of these maintenance doses and receiving   bolus feedings, this is progress in the right direction.

I   am hopeful that he will be moved up to “the floor” by mid-week and out of the   PICU. Tonight is a big night for us, Tristan got his big boy bed, he is now   in his own crib, and both mom and I have been able to hold him with out 90   million hoses and lines getting in the way and without any bedding or   blankets hindering our ability to feel him in our arms. Tonight was the first   time since April 10th that we really got to hold our baby boy! We   even got to put him back in his bed-no nurse help needed J He is making good   progress compared to all of the drama that happened on Friday and Saturday,   but he still has a long way to go before being sent home. Please continue to   keep Tristan Drake Molby in your prayers, as this is only the beginning of   his journey.

~Sean   and Christy Molby

Sunday May 2nd

‎Sunday, ‎May ‎02, ‎2010, ‏‎10:41:50 AM | smolby@gmail.com (Sean Molby)

We   had some compications yesterday, we are still working thru them. We will post   a more detailed update when we have more time. Please keep him in your   prayers

April 30, 3:00PM HAPPY 3 Weeks TRISTAN!

‎Friday, ‎April ‎30, ‎2010, ‏‎3:54:58 PM | smolby@gmail.com (Sean Molby)

It   has been a slower day today, the only big news is he is off his lasix drip   and is now just getting one single dose a day. This is good and was expected   since his swelling is now mostly gone and his urine output has now exceeded   his extra fluid input. (Meaning he has peed out more than the extra fluid   they had put in). They   have tried a couple of times to switch him to the automated settings on his   ventilator, this is the last step before taking the breathing tube completely   out. However, his breathing rate was not as high as they wanted it, so both   times they have had to switch it back. But they did say that all the other   stats on the ventilator were awesome so it is not necessarily a bad sign they   just think he still has some of the sedation meds to wear off. (It also   doesn’t really help that the respiratory therapist switched him to auto mode   right after the two times they had just given him some versed (a sedation   med)….I know logic would have pointed to her that he probably would have   responded better if she had waited or possible switched it off BEFORE he was   sedated. But alas
I am only a mom so what do I know? J)

Since,   they are still trying to get him off the vent they have put off feeding him   for another day L because they need to make sure that he will not regress   when they pull the vent out completely –if he was to regress it could cause   some complications if he did not have an empty stomach. They did tell me once   they pull it out if there are no complications he will get his first feeding   after 4 hours of no vent, so he could still possibly get some food tonight   but we will be okay if he waits till the morning. The important thing is for   him to be okay and ready for each step they take.

They   did pull out his catheter (OUCH!!!) but he was a trooper and only cried for a   few seconds and then was fine so they didn’t have to give him any extra pain   meds to calm him down afterwards and they were surprised because they often   times need to do that. And he peed right after it was pulled for what seemed   like forever so all is still working well down there! ~Christy

April 29th 10:30 PM

‎Thursday, ‎April ‎29, ‎2010, ‏‎11:42:00 PM | smolby@gmail.com (Sean Molby)

Today   overall has been a good day for Tristan. He has finally peed out all of his   excess fluid. He has been awake and coherent quite a bit today and is in good   spirits as he has smiled a lot. For everything he has been through he is such   a happy baby; and that is not just me as a mom thinking that, even the nurses   comment how much better he is than other babies with his condition. He is   just very even tempered and generally content….except when he is poopy, then   it is like all hell has broken loose! Grandma always says how funny that is   since you would think he would be more pissed at all the tubes and wires   coming out from all over his body!They   have taken him off all his pain meds in the continual drips (so the versed   and fentanyl are both gone) and now he only is getting them as needed. So far   he hasn’t needed anything since 9 PM but they will give him a PRN dose (that   means as needed) later tonight to make sure he is comfortable through the   night. So sweet dreams for Tristan! J

Right   now he is talking with Daddy and smiling and wiggling all around. It is a   wonderful sight to see.

He   is pretty much breathing over his ventilator so he is very ready to get it   taken out and with as well as he is doing that will hopefully happen tomorrow   sometime…fingers crossed! Keep all the prayers coming, you are all amazing   and we so much appreciate the support you have given. ~Christy

April 29 (5:00 PM)

‎Thursday, ‎April ‎29, ‎2010, ‏‎5:25:19 PM | smolby@gmail.com (Sean Molby)

Well   I came in today to a big shock, but it turned out to be a good one. It seems   they had one of the patients get really sick and they needed an isolation   room and it turned out that Tristan was the only one in an isolation room   that was stable enough to move. So we are now sharing a room with another   little boy which stinks cause there is not very much privacy but it is good   because Tristan is doing good enough for them to justify that…. But I now   miss my private bathroom! Oh well, I will definitely take a recovering baby   over a private place to pee. JTristan   is doing really good today. He is completely off his fentanyl (sedation/pain   medicine) and they are weaning him slowly off the versed (another sedation   medicine) and he should be completely off that by tomorrow. Then they will   just give him pain meds as needed. After he is all off the sedation meds they   will remove his catheter. He also pooped for the first time since right   before surgery, another good sign as it shows his body is starting to   function normally again.

They   are slowly lowering his ventilator usage and even sedated he is breathing   over the vent and on his own-good sign!!! He should be off of the ventilator   within 24 – 48 hours and then they will also remove the NG tube (the one in   his nose) but then they will replace that with a feeding tube. They decided   against starting feeding him today, it was felt it would be better if he   waited till tomorrow. L

His   swelling is very minimal now; he is just a little puffy but he looks like a   cute little baby again, as compared to an inflated balloon! J He woke up   again when I got here which was really exciting! Especially since he seemed   very alert and his eyes were not cloudy and unfocused like they were   yesterday. He even smiled a little as I was talking to him. He was only awake   for a little over a half hour but it was good to be able to look into his   eyes and see him looking back!

Grandma   came up for a visit while he was awake so she was excited about that. Aunt   Teresa also came up to see him today as well as a friend we met while living   at the Ronald McDonald house. So overall, it was a busy day for Tristan with   lots of visitors.

~Christy  

April 28th, 2010 (58 hours post op)

‎Thursday, ‎April ‎29, ‎2010, ‏‎6:29:36 AM | smolby@gmail.com (Sean Molby)

Real   quick apology, this was suppose to have been posted last night before we left   Tristan’s bedside to head to bed ourselves. Tristan   is doing really well. He is completely off the epinephrine and peeing like a   champ. He still has quite a bit of fluid he needs to ex-spell but for now his   urine output is awesome and he is right were he should be…. Never thought you   would be excited to read a post about a baby peeing did you! J

The   most awesome part of the day was he opened his eyes. He was awake and   breathing on his own starting at around 3:30pm and stayed awake for about a   half hour. They hadn’t really expected him to be as alert as he was for as   long as he was. It tuckered him out pretty fast though and although he opened   his eyes a few more times throughout the day he was not awake for long. But   as he is still on fairly high doses of pain meds this is expected and normal.  

His   swelling in his face has gone down quite a bit but his abdominal area still   looks puffy and really shiny (from being so stretched out). They said they   may start feeding him milk tomorrow morning, this will be his first real food   since April 10 at 11pm. He will only get like a teaspoon at a time and it   will be through a feeding tube but hopefully he will tolerate it well. It is   just one step closer to him getting the drainage tube out of his chest and   then off the ventilator.

Big   sis got to come up for a visit, she was kind of sad that Tristan didn’t open   his eyes while she was there but to kind of make up for it his nurse let her   rub some lotion on his little legs since she (Briah) said she thought they   looked dry.

Not   sure when another post will get up, probably not till tomorrow evening cause   Sean goes back to work tomorrow and with him the knowledge of how to actually   log on to this website. My brain is still not functioning enough to compute   that info yet. Also for those that are not as web savvy as some (me included)   just note that under some of the posts there are links to more pictures. And   we, or rather Sean, is trying to figure out how to put some sort of a message   board up so you all can post comments and such since not everyone has face   book but we are still not sure if this particular web set up will allow that.   Thank you all for your wonderful prayers and let us hope for a big “Welcome   Home Tristan” party at least by the end of May~ maybe sooner!!! ~Christy

April 28th (48 hours post op)

‎Wednesday, ‎April ‎28, ‎2010, ‏‎12:45:31 PM | smolby@gmail.com (Sean Molby)

Again,   we can not thank everyone enough for all the thoughts and prayers you are   sending Tristan’s way. We   came in this morning to great news! The prayers have worked and Tristan has   started peeing, YIPEE!!!! J It is funny how little things that we do everyday   without thought make such a difference to him. So with this new development,   they have now lowered Tristan back to the lowest dose of epinephrine, have   stopped giving him extra fluids, and lowered his ventilator settings as well.   They went down on the fentanyl (this is the sedation medicine), and they were   able to start him on lasix to help reduce the swelling. The new goal for   today is to wean him completely off the epinephrine and get his swelling down   so that the pressure, from the extra weight of the fluid, will be relieved   and it will then make it easier for him to breathe on his own. They can then   start to wean him off the ventilator. That will be a slower process but we   are hoping by weeks end he will be awake and breathing on his own.

He   will also get a visit from his big sister tonight who has anxiously waited   for him to be stable enough to come see him. Briahnna has only gotten to see   him once since he has been here, the Sunday before surgery, so this is a big   day for Tristan all around! ~Christy

April 27th 35 hrs post op

‎Wednesday, ‎April ‎28, ‎2010, ‏‎12:03:54 AM | smolby@gmail.com (Sean Molby)

Well   I’m going to start with….”It’s been a really long day”, Tristan’s   blood pressure has needed constant monitoring, and is finally starting to   show signs of improvement J While the doctors have not been concerned, it’s   been really stressful for both Christy and I. The first 48hrs post op is   “the critical period”, so we have been patiently waiting…   …..and since they keep him sedated during this period there is not a whole   lot to write about. Today they administered a blood transfusion to keep his   hemoglobin levels topped off and they also gave him a cortisone treatment as   explained in the previous post. During this whole recovery period they have   been continually giving him “fluid” (albumin) and epinephrine to   keep his blood pressure up while his body recovers from surgery. Right now   the sign we are waiting for is for him to begin the process of eliminating   all the extra fluids they have been administering so that the swelling will   start to go down. So basically at some point he will pee. Yes we are waiting   for Tristan to PEE!! This will tell us that his body is adjusting, and they   can start using Lasix to help him pull out the excess fluid, that has been   keeping his blood pressure stable. So pray for pee!!!!! J love you all. ~Sean   & Christy Molby

April 26th 12 hrs post op

‎Tuesday, ‎April ‎27, ‎2010, ‏‎8:23:25 PM | smolby@gmail.com (Sean Molby)

So   this is the first time I am posting as Sean has been the amazing husband and   done all the things the last 2 weeks that I just have not been capable of   dealing with. But it seems even he has his limits and the lack of sleep, the   stress of having to return back to work instead of being here with Tristan,   and surgery today is finally catching up with him and unlike me he does not   have medicinal help to get him through the nights (and just to assure you all   I have not turned into a new druggie J but I have no shame in saying “thank   GOD for pain meds” cause without them sleep would be an impossibility). Also,   before I get started I want to thank everyone for their thoughts and prayers,   and all the help we have received. The support our family and friends have   shown has been much needed, appreciated, and greatly admired! You have all   been wonderful and I truly believe Tristan is now doing as well as he is   thanks to you all! He knows you are all out there cheering him on! PLEASE   keep it coming.Well,   we are nearly 12 hours post op and so far Tristan is right were he should be.   He does have slightly low blood pressure but they have assured us, thoroughly   at my constant asking, that for the procedure he went through that it is   expected and they have increased his fluids and are giving him a minimal dose   of epinephrine to help raise it. Again this is considered a normal practice   for his type of recovery. All his other stats are in good range. Heart rate,   respiratory rate, and oxygen saturations are close to perfect and they have   even taken him off the nitrogen and all is going good with that as well. His   blood gases have all come back in the normal range and he is recovering   peacefully and so far without complications. Overall, Sean and I could not   have asked for a better anniversary gift (for those that don’t know today was   our 14th

Wedding   Anniversary-a bit stressful but I have no complaints, he has even promised a   yogurt from the cafeteria before nights end J)

We   will probably be up here for at least a couple more hours or more before   heading back to the RM house to catch a few hours of rest. So we will try to   update again before leaving and then again mid afternoon tomorrow. I know a   lot of you wait anxiously to have the next bit of news…… I am here and know   what is going on and I can’t wait to see what Sean has posted next so I   understand how important the updates are.

Please   continue to keep Tristan in your prayers as he still has a long road ahead.   They consider him severely critical until at least 24 to 48 hours post op, so   until he makes it through the next couple of days it will be very stressful   and nerve racking.

For   anyone wishing to come up and see him you are more than welcome. I am always   within 5+ minutes of getting to him and either Sean or I have to be here for   the majority of visitors. All we ask is that you don’t come if you have any   symptoms of illness at all and that you leave the little ones at home as they   are not allowed in the PICU or the NICU. If Sean is up here as well we asked   that visits with Tristan don’t last more than 10 or 15 minutes as that takes   us away from him since only 2 people are allowed in at a time. Thanks again   everyone for everything! We appreciate all you have done and continue to do!   ~Christy Molby

April 27th 4:00pm 28 hrs post op

‎Tuesday, ‎April ‎27, ‎2010, ‏‎4:29:55 PM | smolby@gmail.com (Sean Molby)

Eyerything   is pretty much the same, still having blood pressure issues, but they are   slowly getting progressivly better as the day goes on. We keep updating the   post op hours, because after the 48 hour period thing should start trending   for the better. They just administered some hydrocortizone and the nurse is   confident that this will help stabilize his stress hormone levels, and help   with keeping his blood pressure up. check back later…….

April 27th 3:45 am (15 hours post op)

‎Tuesday, ‎April ‎27, ‎2010, ‏‎3:42:21 AM | smolby@gmail.com (Sean Molby)

We   are saying goodnight to Tristan, heading back to the RM house to try and get   a little rest so we can be there for him tomorrow……. well actually today.   He is still doing good, all of his stats are where they should be. He is   still having a little trouble with low blood pressure but the doctor said he   isn’t concerned…not as easy for us to think that way but we have been   blessed with a multitude of talented surgeons, doctors, nurses, and others   that have gotten him through this far so we try to accept what they say. Say   a prayer for him before you head off to start your day, they seem to be   working! Thank you all! ~Christy

April 26th Surgery Day

CMH NICU

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